Due to COVID-19 and the protective measures being taken to prevent the spread of the virus, caregivers are now finding themselves facing new and unexpected challenges.
Layers upon layers of difficulties.
That’s how Kristin Litzelman, PhD, describes the current situation facing the caregivers of cancer patients and survivors. It’s a tough job under normal circumstances, but due to COVID-19, and the protective measures being taken to prevent the spread of the virus, caregivers are now finding themselves facing new and unexpected challenges.
“Caregivers often feel overwhelmed, or experience feelings of uncertainty or burden in general, and then being in this really uncertain situation makes it even harder,” said Litzelman, a UW Carbone Cancer Center member and assistant professor in the Department of Human Development and Family Studies.
If you’re a caregiver, you may have many questions right about now. In collaboration with the UW Division of Extension, Litzelman has been providing ‘Stay at Home’ tips for family caregivers, as well as others, and has some specific advice for cancer caregivers.
The first thing to think about is safety – both for the patient and the caregiver. Cancer patients are often at a higher-risk for COVID-19 infection, because their immune systems can be weakened by cancer and its treatments. Litzelman says that while patients should understand their unique risks for COVID-19, and take necessary safety precautions, caregivers need to be extra vigilant, especially when taking trips outside the house.
“Talk to the patient’s medical team about what the risk really is for that individual, and what sort of steps everyone should be taking in order to try and protect the patient’s health as much as possible,” she said. While hand washing and surface cleaning remain good recommendations, a physician may recommend additional safety measures.
Litzelman also stresses the importance of having a plan in place if someone in the house should fall ill. “I think caregivers have probably thought about what happens if the patient gets sick,” she said. “But what if the caregiver gets sick? Who comes in to provide backup care? How do you isolate the sick person and keep the cancer patient or survivor as safe as possible? That’s all important to figure out in advance.”
There are guides out there, such as the Guidance for Family Caregivers document from the Greater Wisconsin Agency on Aging Resources, which can help patients and caregivers put a plan together.
Part of staying healthy, of course, is keeping up with routine medical care. However, with many medical appointments now postponed or cancelled, this can feel easier said than done. While some appointments can be done via telehealth, many cancer patients will still need to make some trips to the clinic. During normal times, caregivers can accompany their loved ones to appointments. However, to better protect patients and staff during the COVID-19 outbreak, visitor restrictions are in place at UW Carbone and UW Health.
That means patients coming in for things like chemotherapy often must do so without a loved one at their side – which can be a big loss. “If caregivers are not present, there may be a lot of holes that aren’t being filled,” Litzelman said, noting that caregivers play many roles during these appointments. They may help a patient fill out paperwork, navigate the clinic, provide emotional support, or help interpret information from doctors and nurses. Sometimes it’s all of that, and then some.
She encourages caregivers to really think about the key roles they play during appointments, and then think creatively about how they still may be able to fulfill those functions. One suggestion is to schedule time, before and after the appointment, for the patient and caregiver to talk, share questions, or just be together.
It can also be beneficial to talk with a patient’s oncology team about ways caregivers might still be able to be involved in an appointment. In some cases, a caregiver may be able to call into an appointment, or join via video chat. Patients may also want to inquire about recording the audio from an appointment on a smartphone, so a caregiver can listen back to it later. “Often times, we find that having multiple ears on something is an easier way for us to process information, rather than just having one person trying to absorb everything that’s happening in an appointment,” Litzelman said.
Amidst all this, Litzelman stresses that caregivers need to be making time for self-care, which even under normal circumstances, can be a challenge. “Caregivers recognize the importance of it, but it’s really hard to take that step away,” she said. “And even if they can step away, caregiving is often still on their mind anyway.”
But there’s good reason for taking that time and trying to clear your mind.
“What we see in cancer caregivers, in particular, is that they sometimes report higher levels of depression or anxiety than the patients that they’re caring for,” Litzelman said. “In addition, their well-being really does influence the well-being of the person they’re caring for.”
So doing things like taking a quick walk outside, eating a good meal, or partaking in an enjoyable activity can all be beneficial. If that’s not possible, Litzelman encourages caregivers to take brief pauses to reset. “It’s important to remind ourselves that we can find that space wherever it exists, even if it’s just in five second increments, which can potentially be helpful,” she said.
Finally, caregivers should not hesitate to ask for support – even if they feel they do not need it. While family and friends are often just a phone call away, they may not understand the unique challenges of caregiving. That’s where local and national support groups and services can help out. For instance, the Caregiver Action Network has a 24/7 Caregiver Help Desk, while the American Cancer Society has a helpline specifically devoted to cancer. UW Carbone also offers numerous patient and support services, and partners with other organizations in southern Wisconsin that provide support to caregivers. While these groups are temporarily suspending in-person meetings, many virtual options are available.
“There are a lot of places where caregivers can get more information in order to dig into tangible things that they can do right now,” Litzelman said. “Even when we can’t get the breaks that we would normally get, they may be able to provide some ideas of how we find that sense of space and that sense of fulfillment.”
More tips for staying safe at home can be found at the UW Division of Extension’s webpage.