Mrs. G has been in the emergency department for hours. An exhaustive workup didn’t find any serious cause for her weakness, the reason her daughter Rosa (not her real name) brought her in. I tell them that Mrs. G seems to be a bit dehydrated and, after we give her some intravenous fluids, she can go home. Mrs. G’s eyes light up. Her daughter’s go blank. Rosa dabs at a tear rolling down her cheek. I sense that she expected, maybe even hoped, that her mother would need to stay in the hospital, even just for the night.
A brick of paperwork that Rosa gave me when they arrived chronicles what has become of Mrs. G’s life — enduring the unforgiving fates of congestive heart failure, diabetes, high blood pressure, mild kidney failure, osteoporosis, depression, and early dementia. It also details her last hospital admission for pneumonia, a long stay that left her with an open ulcer on the skin over her tailbone that, months later, still hasn’t healed. Rosa was worried that another pneumonia was brewing.
“I’d like to see your mom drink something,” I tell Rosa, then catch myself. I was disrespecting Mrs. G by talking around her and directing the conversation to her daughter. After decades of doctoring, I should know better. That an older patient sits in silence doesn’t mean she hasn’t a strong voice in her own care; that she carries a diagnosis of dementia doesn’t necessarily imply she can’t comprehend what I’m saying.
“Can you try to drink something?” I ask Mrs. G, pointing to a Styrofoam cup half-filled with ice and water.
Rosa folds a sheet and slips it behind her mother’s back as a pillow. “Drink up,” she says. “Did you hear what the doctor said? You have to drink more.”
Her mother rolls her eyes.
“She’s stubborn,” Rosa says, smiling. “I try everything to get her to drink. Water. Tea. Juice.”
Her brothers and sisters don’t understand how hard it is, Rosa says, and they’re not around much to find out. This time her smile can’t disguise the strain.
I realize that the most acutely distressed person in the exam room isn’t Mrs. G but her daughter, her caregiver.
In the emergency department, the patient receives the bulk of the attention. Physicians spend far less energy probing the caregiver’s experience. As common courtesy, I try to introduce myself to everyone when I enter the exam room. Yet this recognition of caregivers’ presence isn’t necessarily recognition of the challenges they face, and often doesn’t lead to a discussion of the burdens of such work.
Caregivers are individuals, usually family members, who regularly look after one or more sick, frail, or disabled individuals. Caregiving tasks can be all-consuming. They include feeding, dressing, grooming, assistance with toiletry, bathing, shopping, cooking, housekeeping, and doing laundry. The work can extend to transportation, handling financial matters, arranging doctor visits, and sometimes making the decision to come to the emergency department.
Even when undertaken from a wellspring of generosity and love, caregiving can be a source of burnout, with physical, emotional, and psychological exhaustion. Caregiver burnout occurs when individuals don’t get the help they need, try to handle too much, or take on things they aren’t capable of doing. When caregivers do carve out time for themselves, they may feel guilty about it, resulting in a paradoxical worsening of their burnout.
The psychological distress and physical demands of caregiving are reflected in a wide range of biological responses that include slower wound healing, elevated blood pressure, and an impaired immune response. These can take a toll, leading to an overall increase in caregiver mortality.
Caregivers often do their noble work in the shadows. It’s embarrassing to admit this, but it wasn’t until I asked Rosa what she was anxious about that I appreciated how worn down she looked with her uncombed hair, lack of makeup, loose sweatshirt, baggy sweatpants, and Crocs.
Despite the negative test results, Rosa still worries that the slight fever her mother had spiked earlier in the day might point to something serious, like pneumonia. “Wouldn’t it be safer to keep her in the hospital?” she asks. Moving her mother to and from the car is a chore. She doesn’t want to get home only to have to bring her back to the hospital.
I feel myself taking a different look at Mrs. G’s daughter. Is she hoping to leverage her mother’s symptoms for a break, a soft version of what has been called granny dumping?
I was introduced to that concept during the first Thanksgiving of my emergency medicine residency. Families drop off elderly relatives in the emergency department with a packed bag and nebulous complaints and then take off, expecting the hospital to care for them. Other judgement-filled euphemisms include positive tail-light sign and packed suitcase syndrome. It isn’t unique to the U.S.
Over the course of my training, I became angry with these families, especially when they didn’t stick around to talk to the physicians. Eventually, though, experience taught me that this problem is typically the result of systems that don’t provide enough resources for caregivers who often face daunting tasks. These obligations are equivalent to unpaid full-time jobs. Could anyone blame them for seeking a breather?
Caring for caregivers can be difficult, too. It’s not easy for them to think of their own troubles when they’ve been so focused on someone else’s needs. I once cared for a middle-aged woman with signs of a heart attack, including a worrisome electrocardiogram. She refused to stay in the hospital for further evaluation because she was caring for her mother with dementia.
I turn so I’m addressing both Mrs. G and Rosa. “I’d like to consult a social worker,” I say.
In situations like these, a social worker can be an essential member of the treatment team. She or he can explore whether the patient is eligible for services and, if so, help arrange them. I think that might lighten Rosa’s load. But she quickly refuses. She has everything under control, she says, adding that they can’t afford extra services.
Actually, it might be in Mrs. G’s best interests for Rosa to agree to get some caregiving help. One study suggests that Medicare patients who are looked after by caregivers who score high for fatigue and low for health status and depression incur higher health care costs, including more emergency department visits.
An estimated 14.7 million older adults receive assistance with daily activities from spouse and family caregivers. Only one-quarter of caregivers take advantage of supportive services, possibly because many of them may not perceive themselves as caregivers, a term with professional connotations.
In the emergency department, caregivers are more than the other people in the room. Their assistance can be a treasure trove of information and insight when the patient has trouble communicating with the medical staff. But when the strain of caregiving reveals itself, clinicians like me have a responsibility to pursue those worrisome cracks.
Assessing a caregiver’s roles, capacities, vulnerabilities, and strengths, when done well, is a nonjudgmental process conducted by expert staff members who have the time and training to appreciate these often complex situations as well as a deep, practical understanding of possible solutions. These experts are typically social workers or nurses, but there are valuable assessment tools that serve as useful guides for busy health professionals in emergency departments and elsewhere.
Implementing these tools in health care practice is an intervention strategy that one expert believes could be done today.
Caring for patients sometimes requires that we reach into the shadows and shine a light on their caregivers. Even if emergency clinicians lack the time and resources to fully implement these assessment strategies, at the very least we can recognize that caregiving is difficult and that seeking help or a break isn’t a sign of weakness or failure. We must also remember that overwhelmed caregivers are often reluctant to accept assistance.
Rosa doesn’t want to discuss the caregiving challenges she’s experiencing with me or a social worker. I wonder about her stiff resolve, whether my offer of assistance also invites judgement, that her siblings might consider the need for outside help to be a failure on her part.
So I do what I can. I make a point of saying she is doing a great job with her mother. I home in on the pressure sore in her mother’s lower back. It is clean and healing, at least as well as those things heal. “That’s a tough wound to care for,” I say. “Really tough.”
It looks for a second like Rosa will crumble into her seat. “It is,” she says. “Thank you for saying that.”
Jay Baruch, M.D., is associate professor of emergency medicine and director of the Medical Humanities and Bioethics Scholarly Concentration at the Warren Alpert Medical School of Brown University in Providence, R.I. Some of the details of this case have been changed.
We love your content. Regards from Pissouri Bay Divers from Cyprus!
Love the article. I want to talk with the author. Please contact me by email divingcyprus[at]gmail.com
As a full-time caregiver unpaid with no holidays are brakes caring for two . I have been a caregiver from the time I was a child to now as an adult .
The article is interesting on a few a few points 1 main point is the doctor that’s writing this article as an exception to the rule and not the norm it would be great if doctors would have this perspective I think things would be much healthier and hospitals and in emergency rooms however what I’ve learned is that I can’t force that perspective on any of them number 2 anyone who deals with the social worker in Ontario is just asking for trouble and will end up with more work to do more heartache more headaches as our Healthcare System in Ontario is so fragmented there is no fluency from one program to the other and that alone is hard on anyone especially the family caregiver and the person who is not well when one speaks to a social worker one must understand that they are probing to see if there’s problems they are not there to solve those problems 9 out of 10 times you are being told by the social worker by the hospital by the doctor what they want as opposed to asking what the patient and the family caregiver needs or wants
As we currently are going through more changes again with the Lynn the former CCAC and things being centralized which makes no sense because not all cases are going to fit into pre-packaged box or scenario it’s just getting extremely more difficult 4 family caregivers with no supports with reduced Services a lack of fluency in programming and especially if a family is already challenged with resources and the resources ultimately mean money if you have money you can buy all that you need if you don’t have it you’re at the mercy of the system and therefore the caregiving scenario is beyond what anyone can imagine there’s a lot of what I’m saying that people have not even touched or studied and seeing the effects of what it does to a caregiver all these people that are mentioned in the article the social worker as I like to point out they all have a starting time and they all have a finishing time with their jobs and they all get paid with a family caregiver it’s nonstop there is no brakes there’s no finishing time there’s no starting time there’s no holidays there’s no vacation and the sooner that the system in Ontario and in Canada realizes that given that we are saving millions and millions of dollars the better we all will be in the house here will it will be.
If anybody thinks that any of our systems within the health care in Ontario is working is mistakenly delusional.
We need a change an attitude within the healthcare profession about caregivers and their responsibilities especially the non Paid Family caregivers we need someone bold within the political Spectrum that will have the courage and the will to make some hard core changes that ultimately will benefit those that are i l l benefits caregivers and when we make those changes it all to mately will benefits the economy and financial well-being of the Healthcare System but until then we have a fragmented broken-down non-working non positive system that just burdens the family caregiver even more.
My apologies 4 the incorrect grammar and ongoing sentences as I was using voice to text which actually speaks to the caregiving issue there’s no way I have time to type out all of that or spend time typing out things so the voice to text is a great tool on a smartphone however it still doesn’t do everything we needed to do so I can my apologies to anyone who is reading my comments I would love to edit it but I’m not sure that I can if there is maybe someone can tell me how thank you
Well, yeah, I must say care giving is tough task and seldom noticed, acknowledged and at times ends up in serious psychological, physical issues to themselves which needed prompt attention. Article addresses almost everything, I often feel while taking care of both my parents having dementia and psychological issues. It is draining life each moment for us. In India, there is no mechanism, system to even adreess this issues. Government health services, NGOs presence in field is nil. There are no simple day care facilities even in big cities in India and no one seems to take notice of it. We, care givers and their families are the worst victims of circumstances left to the mercy of GOD. Urgent attention n help is needed to people like me and many more here in India which is on the rise exponentially day by day. I can only say all others to pray for us.
Great article and confirmed the work I am currently developing. The program is for assisting patients and their family members in self care. Families embark on the process together and practice placing the oxygen mask on. Living with chronic illness doesn’t mean you can’t enjoy a sense of well-being. The key ingredient for resilience is support. The program we currently developed does just that.
Dr.Baruch is able to point to the real challenges of an ED shift. If it was just the medical stuff our lives would be easy, but the moral challenge of addressing everyone in the room, the unspoken as well as the spoken questions, is what makes the job difficult. Thank you!
At last, someone noticed.
I’ve been living this life for over 5 years now, with no end in sight. Although my mom is now in memory care, I am still the “go-to” person for everything.
I was in the emergency room last month with Mom. It was packed. I had nowhere to sit. We ended up being there for literally the entire day. I was fielding phone calls and emails from my workplace and Mom’s facility while trying to keep her from crawling off the gurney, dealing with her confusion, taking her to the bathroom, etc. By the end of the day I was exhausted.
Oh yes, here’s the parting gift. After being exposed to the flu virus by scads of sick people coughing their way through the ER, I came down with influenza myself two days later, in spite of having had a flu shot.
Caregiver judgment would evaporate pretty quickly if you had to walk a mile in our shoes.
Wow. I SO hear you. I am so sorry. My wife and I are now trying to adjust to the ever-more-rapidly declining state of our Daughter’s Stage IV pancreatic cancer (and this ain’t our first rodeo). We moved her back in with us last year. She’s now in bedside potty, shower seat, walker, and wheelchair territory. Home health and PT 2x a week.
Today is full body bone scan day. Just got back from the tracer injection, back for the scan in a couple of hours.
I can see I won’t get anything else done today.
The ER; don’t get me started. It seems that the ONLY way to get admitted anymore is through the ER. Count on 10-12 hours to get to a floor.
Bobby, I think we do this gig out of love, or at least a sense of responsibility and family solidarity. I wouldn’t have it any other way, and I’m pretty sure you wouldn’t either.
The price is huge though. The fatigue of the past few years has soaked into my bones. On weekends you can find me still in pajamas at 1 p.m. I can’t condone granny-dumping and I would never do this to my mom, but I can understand the desperation to just have a break.
This piece was beautifully written and captured all the ambivalence and ambiguities in these situations. I don’t know what the answer is but maybe it will open the door to more conversation.
Wishing you peace and courage.
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