{"id":21988,"date":"2021-08-10T13:28:06","date_gmt":"2021-08-10T17:28:06","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=21988"},"modified":"2023-02-20T11:06:42","modified_gmt":"2023-02-20T16:06:42","slug":"its-time-to-acknowledge-the-invisible-caregivers-among-us","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2021\/08\/its-time-to-acknowledge-the-invisible-caregivers-among-us.html","title":{"rendered":"It’s Time to Acknowledge the Invisible Caregivers Among Us"},"content":{"rendered":"

I received an uncharacteristically anxious text from my friend Aileen: \u201cI am having an emergency with my Mom. Please call ASAP.\u201d When I last talked to Aileen, her mother\u2019s dementia had been worsening slowly. A little more confusion, a stovetop left burning after cooking a meal.\u00a0 But now, her mother was significantly more agitated and paranoid\u2014pacing the halls, hearing music, convinced her family was plotting to kill her. She wasn\u2019t sleeping, so Aileen and her father were on duty 24\/7. It had become unsustainable.<\/p>\n

Aileen didn\u2019t know what to do. She wanted to protect her mother, and feared triggering her mother\u2019s panic by entrusting her to unfamiliar medical staff.\u00a0 But I could see the writing on the wall\u2014If they didn\u2019t get professional help, they would fall apart.\u00a0 I finally convinced her to go to the ER, clarifying that asking for help wasn\u2019t a sign of weakness but a sign of strength.<\/p>\n

Like most physicians, I never learned about the issue of family caregiver burden in my medical training. I hadn\u2019t noticed caregivers in the halls of the hospital because I was trained to focus on the patient. But if the support structure around the patient is crumbling, the patient will, too. I became aware of this issue only after making a film about a friend who went home on hospice to die. But during the film\u2019s editing process, I realized that her husband\u2019s story was more urgent. I had thought of him as a secondary character, someone to open the door for the hospice nurse. But his continued deterioration over the course of the film was impossible to ignore.<\/p>\n

My friend Aileen is not unique. She is one of 53 million people caring for family members at home\u2014that\u2019s one in 5 Americans, and the number is rising fast. As families shrink and disperse, and rates of divorce and debt rates rise, we are entering the perfect storm.\u00a0 And the stress of the pandemic has punched an extra hole in our already leaky boat.\u00a0 Most caregivers like Aileen don\u2019t have many other family members around to take shifts and help with the stress and work. So they become progressively exhausted, financially debilitated, isolated, and overwhelmed. Their own health suffers, too.<\/p>\n

When Aileen checked her mother into the hospital, she got three days of rest and her first full night\u2019s sleep in months. Her mother returned calmer, and was able to settle back home. But now they were anxious. It wasn\u2019t a matter of if <\/em>her mother would decompensate but when<\/em>. The situation felt like a ticking time bomb.<\/p>\n

So what can healthcare providers do to help caregivers like Aileen? Let\u2019s start by identifying the caregivers associated with our patients. Caregivers are everywhere; it\u2019s just a matter of looking for them. Many patients don\u2019t realize that their wife or daughter is actually their caregiver, and many caregivers don\u2019t realize that they are more than just a wife or daughter. Start by asking the patient: Who goes to the pharmacy for you? Who drove you to your appointment today? And remember that your patients might be caregivers too.<\/p>\n

Once you\u2019ve identified a caregiver, acknowledge their work\u2014the love, sacrifice, and loyalty that it entails. Many caregivers have told me that simply having their physicians or nurses acknowledge these issues makes them feel empowered and less alone. Be sensitive to the fact that caregivers often experience guilt, shame, and feelings of inadequacy around their role. As such they are unlikely to ask for help. And even if they are open to getting help, they are also often too overwhelmed to utilize help. As healthcare providers, it\u2019s our job to lean in and initiate support, not wait until caregivers are worn out and depleted.<\/p>\n

Identification of a caregiver is also a good time to clarify the patient\u2019s medical goals and encourage completion of a POLST form<\/a> if appropriate. This will not only ensure goal-concordant care for the patient but will also help support the caregiver who will likely be the one tasked with making difficult decisions when the patient\u2019s condition worsens. When I asked Aileen what treatments her mother would prefer in the event of major organ failure, she was adamant that her mother would not wish to be kept alive on machines and would prefer care focused on comfort. Not only did Aileen\u2019s mother not have a POLST form, it had never been brought up by her physician.<\/p>\n

Finally, after identifying caregivers and acknowledging their experience, we must connect them to helpful resources\u2014professional and personal. Hospitals should be well-connected with the resources in their local community, and have personnel, often social workers, who can connect patients with resources like hospice, respite, support groups, educational programming, and other programs and benefits that can aid them in this journey.<\/p>\n

Family caregiver burden is a rising public health crisis that will affect almost all of us eventually. As clinicians, we are in a prime position to offer help to this critical workforce.\u00a0 It\u2019s time for us to acknowledge the invisible caregivers among us.<\/p>\n

Jessica Zitter, MD, MPH, specializes in Critical Care and Palliative Care medicine, and practices at a public hospital in the San Francisco Bay Area. She is the author of <\/em>Extreme Measures: Finding a Better Path to the End of Life<\/em><\/a>, and director of <\/em>Caregiver: A Love Story<\/em><\/a>.\u00a0\u00a0<\/em><\/p>\n

Did you enjoy this blog?<\/strong> Sign the Manifesto<\/a> and learn more about becoming a member.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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