The month of November is National Caregivers Month, a time to recognize and highlight the work and contributions of family caregivers around the country who are taking care of loved ones. It’s also a time to advocate for these caregivers and provide them with the tools they need to ensure the best possible circumstances for themselves and those receiving care. According to Mental Health America, there are over 53 million Americans who are unpaid caregivers to family, friends and neighbors. Twenty-seven percent or nearly a third of adult caregivers are helping someone with a mental illness. At JFS, our Family Caregiver Support Program aims to support unpaid family caregivers while reducing stress and anxiety. In recognition of this month, we caught up with Felicia Rock, Caregiver Counselor, and Jesica Benitez, Family Caregiver Support Coordinator, for their thoughts around caregiving during COVID-19.
1) In your respective roles, what are the main challenges you see caregivers struggle with?
Felicia (Caregiver Counselor): Challenges that I’ve seen caregivers struggle with include accessing resources and understanding complex systems when their loved ones need a higher level of care. I’ve also seen caregivers encounter difficulty when accessing their own healthcare or taking care of finances. Many times, a caregiver’s spouse or family member has handled all of the financial decisions, so for the first time, they are having to make decisions that directly impact their future. The same can happen with cooking or cleaning. Suddenly, caregivers find themselves in a role that they’ve never before occupied. Understandably, this can be overwhelming for many people. Lastly, guilt and resentment are emotions that can come up within caregivers, especially if the relationship history with their loved one was or is complicated.
Jesica (Family Caregiver Support Coordinator): Looking after a loved one can be exhausting, and many caregivers I work with are dealing with high levels of stress right now. Especially when a caregiver is living with their loved one, they tend to be together or in close proximity nearly 24/7. This can create a lack of boundaries and can lead to stress among both people. Caregivers often don’t want to bother their other family members (for example, children or other relatives) because they have their own challenges and issues they are dealing with. This unfortunately means that caregivers bear the brunt of the work and it can also mean they don’t get sufficient emotional support.
2) How can caregiving have a significant impact on the life and well-being (emotional, mental, physical) of the caregiver?
Felicia/Jesica: Relationships can often change or friendships can gradually fade away because caregivers feel like they don’t have the energy or capacity to maintain these connections. I’ve also seen clients experience identity crises, where their identity as “caregiver” eclipses the other identities they once held (employee, friend, spouse, etc.). Sometimes, when asked “how are you?” caregivers will immediately start talking about their loved one’s feelings or current state, and not even realize it. Feelings of depression, loneliness, isolation, anger, anxiety or grief are all common emotions. Physical exhaustion, forgetfulness and even difficulty sleeping can also occur.
We’ve heard clients say, “I am always on alert, just in case my loved one needs me.” Of course, a caregiver wants the best for the person they look after, but at times it means they forget about themselves in the process. Sometimes, caregivers only realize the impact that their caregiving role has on them when they are in crisis or heading towards one.
3) In what ways has COVID-19 exacerbated the circumstances for family caregivers and their loved ones?
Felicia/Jesica: The caregivers with whom we work say, “Isolation is not new for me—I have that down! For the first time, I feel like people understand what it is like to not be able to leave home”. Conversely, especially among caregivers who are more extroverted or who had regular outside activities before COVID-19, feelings of isolation have increased exponentially. Many of these caregivers received outside respite care or care aides for 4-6 hours per week, so they could have a break from time to time. But in light of the virus, the risk of having someone come from outside was too great. So the relief they were receiving (like help with household chores or keeping their loved ones company) is gone. It has been overwhelming.
People are also finding that if they need to place their loved ones outside of the home, the process is a lot more complicated due to the pandemic. Caregivers are concerned about the possible risk and exposure to the virus, while others are worried that they wouldn’t be able to visit their loved ones in person or on a regular basis.
4) How can unpaid family caregivers practice good self-care on a regular basis?
Felicia: Ask for help. Breathe. Have a mantra and practice positive self-talk. I also recommend talking to people outside of your situation regularly, even just for a few minutes—your feelings are real and your feelings are valid, and it’s good to express them whether in a virtual support group or to a therapist or other trusted person. It can also be helpful to take a few moments at the beginning or the end of the day as a reality check. Often, caregivers feel like they are never doing enough, so keeping a balanced outlook can help get from one day to the next. I use a technique called “GLAD,” adapted from “The Anxiety Workbook.” Each day, the exercise encourages us to tell ourselves one thing we’re grateful for, one thing we learned, one thing we accomplished and one thing we delighted in.
Other ideas include the following:
- Moving your body/stretching/getting outdoors (gardening, walking, etc.). Break it down into 5 or 10 minute-increments, if you need to. Stress builds up in the body, and a little movement throughout the day can help let some of the stress go.
- Prioritizing tasks: What absolutely needs to get done? What can you let go of?
- Practicing meditation or daily prayer, if that feels good to you.
- Practicing mindfulness—observing feelings that come up might help them to pass through; slowing down and noticing your feelings, your body, can help to slow down and come back to the present. You might not always like the feelings that come up but this can help over time.
- Making sure you are prioritizing your own well-being.
5) What can family caregivers do if a loved one resists help, going to the hospital or taking medication?
Jesica: Assessing for safety is the most important first step. Enlisting help from doctors can also be a good idea. It can be easy to assume we know what’s best for those we care for, and sometimes we can forget to put ourselves in their shoes. You can try exploring the reasons why a person might be refusing help. Are they scared of going to hospital? If so, why? Are they worried about side effects from taking the medication? Perhaps they’re worried about remembering to take the medication in the first place? These situations can be overwhelming to respond to alone. We recommend seeking help from a medical professional, or perhaps a combination of a counselor and doctor. Talking to professionals with different perspectives can also help the caregiver learn new strategies and approach the situation differently.
6) What are some of the biggest misconceptions people have about family caregiving?
Felicia: People sometimes think caregivers don’t need extra help. Of course, every family’s situation is different, but often caregiving can be a full-time job for many. On the flip side, it’s not uncommon to hear people say, “I could never be a caregiver—I don’t know how you do it!” I read an article recently and discovered a great quote by former first lady Rosalynn Carter: “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Our Family Caregiver Support Program aims to support unpaid family caregivers while reducing stress and anxiety. Unpaid caregivers from all backgrounds living in King County who are caring for an individual not receiving Medicaid-funded, long-term care services are eligible. Services offered include information, education, and referrals; respite care; housekeeping and errands; caregiver counseling (up to six free counseling sessions); support groups and classes and financial assistance. For more information or to make a referral, please call Jesica Benitez, Family Caregiver Support Coordinator, at (206) 861-8790 or via email at firstname.lastname@example.org. Support is also offered in Spanish.