Over nearly a decade, this thread has received thousands of comments about one of the most frustrating aspects of caregiving: Does anyone ever really ask how you’re holding up while you’re caring for an elderly loved one?
No, the casual acquaintance who, upon asking, expects nothing more than a standard, “Fine, thank you,” doesn’t count.
Instead of making a caregiver feel connected to and supported by those around them, this kind of exchange can actually be terribly isolating.
Most family caregivers are rarely asked how they are doing by someone who is willing to hear the full, honest answer. Even when someone really does want to know, how could they possibly understand unless they have also spent time caring for an ill or aging loved one?
The “fine, thank you” mentality can even become so ingrained that a caregiver may stop asking themselves how they are faring. Ceasing to have an honest inner dialogue can intensify a family caregiver’s feelings of isolation, putting them at great risk for developing caregiver burnout—a dangerous condition characterized by physical and emotional exhaustion.
Cara Levine, Associate Director of The New Jewish Home’s Kittay Senior Apartments, an independent living community in Bronx, New York, says that most caregivers don’t even realize they’re experiencing the negative impacts of caregiving until it gets too severe to ignore. They are so focused on caring for their loved ones that they forget to monitor their own physical and mental health.
According to Levine, the most effective way to improve caregiver well-being is to start being honest and open with yourself. How ARE you doing today?
Caregiver Needs Should Come First
Family caregivers are often advised to take care of themselves. But for many, the statement, “If you don’t take care of yourself, then you won’t be around to take care of them,” is as unhelpful as it is true.
While many find fulfillment and purpose in caregiving, this role can also come with negative effects. Isolation, chronic stress and fatigue associated with caregiving take a serious toll on one’s mind and body. According to research published by the Centers for Disease Control and Prevention (CDC), nearly 20 percent of informal caregivers reported being in fair or poor health. Another study conducted by researchers at the University of Pittsburg found that spousal caregivers experiencing care-related strain are 63 percent more likely to die within four years than noncaregivers.
But, when your day-to-day life revolves around caring for someone else, how do you begin to make yourself a priority? Levine says that caregivers should start by taking stock of their situation and pinpointing specific sources of stress and anxiety. She recommends asking yourself the following questions to get started:
- How am I feeling today?
- What is it about my situation that is making me feel this way?
- What things are causing most of my stress?
- What things are stressful but manageable?
Find Ways to Reduce Caregiver Stress
Once you’ve identified the main stressors in your day-to-day life, you can devise strategies for tackling each one. Levine suggests contemplating these questions when formulating your plan for better self-care:
- Knowing that I can only control myself and my outlook, what steps can I take to manage my stress levels?
- What do I have to do to regularly set aside some time for myself?
- If I had free time, what would I want to do with it? What do I enjoy doing?
- What steps can I take to prioritize both my physical and mental health?
“Everyone needs an outlet,” Levine notes. “The key is to figure out what works best for you.”
Whether you find solace in the synagogue, decompress on daily walks or enjoy a relaxing soak in the tub, you need to find the time to do things that make you feel good and recharge your batteries. For example, throughout her career in the elder care industry, Levine has made a point of going to go see a silly movie every so often to lift her spirits. “Being a caregiver, sometimes you just need to get away and laugh,” she explains.
Seek Out Help and Respite Care
Once you figure out what you need to safeguard your physical and mental health, make it happen. This is easier said than done, of course, but it’s the only way you’ll beat caregiver burnout.
According to Levine, one of the hardest things for caregivers to do is to make their needs known and ask for assistance. Some caregivers refuse help even if they receive sincere offers.
“Sometimes you have to be willing to accept help,” she declares.
People in your life who know that you’re caring for an elderly loved one probably want to help you, but they can’t be expected to guess what you need. You need to be honest—sometimes bold—and tell them what would be useful.
It can be something as simple as asking your neighbor to take care of your lawn while they’re out mowing their own or asking Mom’s friend to come over to visit for an hour or so each week. Small requests can help you find more time in your schedule—time that you may be able to turn into a break from caregiving.
Levine laments that many family caregivers seem determined to withhold the truth about how they are feeling from their loved ones. We often feel pressured to put on a brave face for those around us—especially our care recipients whom we do not want to feel like a burden. However, expressing your emotions in a calm, productive way may help to make everyone in your life more aware of how caregiving has affected you and the kind of support you could really benefit from.
A caregiver obviously can’t share all of their feelings with their neighbor or their care recipient, so Levine recommends attending a caregiver support group. These groups are a great way to connect, share and vent with fellow caregivers who understand what you’re going through. Whether they’re online or in-person, Levine feels that, in addition to a sense of community, support groups can help caregivers accept and gain a better understanding of their situation. Best of all, you can be completely candid without fear of judgment; these men and women know exactly how you feel.
As a caregiver, it isn’t realistic to travel this road alone. No one who truly cares about you expects you to. The sad reality is that some caregivers truly do not have the support from family and/or friends that they deserve. However, this doesn’t change the fact that all family caregivers need support and respite. There are numerous resources available to caregivers to help them and their care recipients. Research government resources, benefits programs, adult day care, in-home care and senior living options such as assisted living, nursing home care and memory care. It takes time and effort to find the resources we need, but they do exist. Your local Area Agency on Aging is an excellent place to look for elder care services and supports.
Be Honest With Yourself and Others
The key to improving caregiver well-being is to be able to honestly identify your needs and accept the fact that you can and should rely on others to help you. Knowing when to seek help can be difficult, but it’s far better to start this process too early than too late. The physical and mental health effects of caregiver burnout can be long-lasting and even permanent.
There will always be people who expect you to be “fine” no matter what you’re going through. But, the more honest you are with yourself and with others in your life, the more people you’ll find who really do want to know how the caregiver- YOU are doing today and how they can help.
Sources: Characteristics and Health Status of Informal Unpaid Caregivers — 44 States, District of Columbia, and Puerto Rico, 2015–2017 (http://dx.doi.org/10.15585/mmwr.mm6907a2); Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study (https://jamanetwork.com/journals/jama/fullarticle/192209)