If you’re a family caregiver—an adult child caring for an aging parent, for example, or a wife caring for a husband with cancer—you’re far from alone. At last count, there were 53 million family caregivers in America—one in every five adults. But the truly shocking fact isn’t how many family caregivers there are. It’s that all of those caregivers have a high risk for getting sick themselves. A 2020 research report showed that 23 percent of family caregivers said that caregiving had made their health worse. In a significant percentage of cases, the caregiver becomes sicker than the care receiver.
Caregiving takes a toll
Caregiving is physically, mentally, emotionally, and socially stressful. And all that stress takes a toll on health, with studies showing that family caregivers are more prone to stress-related illness like hypertension, insomnia, and substance abuse.
Physical. Often, the caregiver has to lift or move the care receiver, or otherwise perform functions the care receiver cannot do for themselves. Back pain and other types of musculoskeletal pain are the common result. As the needs of the care receiver increase, the demands on the caregiver also increase, leading to physical exhaustion. But the caregiver feels they have no choice in the matter—they must keep going.
Mental and emotional. Stress and lack of control go hand in hand. And caregiving brings with it many mental and emotional stresses. You can’t control the loved one’s health condition. You can’t control what the loved one needs. Caregiving changes your relationship with the loved one. Caregiving can crowd out other important activities in your life. As the caregiver, you are always “on call” to care. Financing and coordinating your loved one’s care is difficult, and you can feel like you’re never doing enough, despite doing all you can do. In caregiving, you must make decisions you never wanted to make. As a result of all these stresses, you feel a wide range of conflicting emotions, including guilt. And you are also confronted with grief—the implications of your loved one passing away.
Social. You’re spending much more time caregiving and much less time seeing friends, engaging in hobbies, or participating in other social activities. The result is often loneliness and depression. Research shows that caregivers are 74 percent more likely to be depressed than non-caregivers. And depression itself is a risk factor for heart disease, diabetes, and other chronic conditions.
The bestselling book on caregiving is titled The 36-Hour Day—an experience that caregivers can relate to! Caregiving takes time. As the needs of your loved one increase, you will have to spend more and more time addressing those needs. The following strategies can allow you to better accommodate the needs of your loved one within the context of your daily life:
Allocation. Carve out time in your existing schedule to address the needs of your loved one. For instance, you may decide to forgo a favorite Saturday sporting event in order to care for your loved one.
Timing. Choose the timing that works best for you to perform care-related activities. For example, if your aging mother needs you to accompany her to a doctor’s visit, select an appointment time that is the most convenient—or least disruptive—for you.
Duration. Determine how much time you will spend in the caregiving task. For example, if you are visiting the care receiver, decide in advance how long you will stay, and stick to your plan if possible.
Frequency. Evaluate how often you must perform care-related tasks so you can identify the best frequency for your effort. For example, if you’re managing your loved one’s prescription medications, try to plan one pharmacy trip per month for all the refills.
Taking time. Make sure that your schedule allows you to do things that you find personally rewarding.
Often, there’s a primary family caregiver who seems to bear the most responsibility for day-to-day caregiving tasks. If that’s you, you may feel resentful about it. You may feel other family members don’t understand what you’re going through or aren’t interested. Their suggestions may seem unhelpful, as if they’re passing judgment on how you’re approaching things. Stress-reducing strategies in this situation can include:
Don’t get defensive. The other family members can’t be in your shoes, and don’t fully understand what you are going through. However, try to accept any of their suggestions as if they’re coming from a place of genuine concern and love.
Ask for help. If you’re feeling overwhelmed or know that you need assistance, don’t hesitate to reach out and ask for it. Sometimes, family members are in a position to give you relief.
Communicate regularly. Regular communication is a must for family support. Of course, there is much to consider—the physical location of different family members, their capabilities and skills, their availability, their resources, the function or dysfunction of historic family relationships, and the desire of a family member to participate.
But whatever the situation, you need to be able to say to one another, “Okay, we know that perhaps in the past we’ve had our differences. And in the past, things used to be a certain way with our loved one, and they’re not that way now. But we recognize today that we are family, and that our loved one needs us—and we need to figure out how we can work together to help our loved one.”
Many family caregivers are really hard on themselves because they don’t know how to be a caregiver. But that’s okay because nobody knows how to do many of the tasks of caregiving when they begin. The secrets of building skills:
Think positively. If you look at the tasks you have to perform for your loved one, and you say to yourself, “I can’t do this,” you will feel frustrated, discouraged, and overwhelmed. Instead, change your way of looking at the situation. Think, “I may not know how to do this right now, but I can learn how to do this.” That way of thinking is hopeful, encouraging, and positive, and it allows you to be more successful.
Practice, practice, practice. Remember, you can learn how to be a caregiver—how to get your loved one in and out of a car, how to move them into and out of bed, how to groom, feed, toilet, and the like. And learning is a function of practice. By viewing skill-building in caregiving as a process of trial and error—just like learning to play the piano, or crochet, or any type of skill—you’ll see clearly that it involves practice, mistakes, and steady improvement.
Caregiver support groups
Caregiving support groups are one of the most effective ways to reduce caregiving stress and are worth a try, even if you’re reluctant to join one.
A caregiver often feels isolated and that nobody understands what they are going through. A caregiver support group consists of people who actually do understand your situation. And because they’re also caregivers, they can offer help in the form of moral and emotional support, reinforcement and validation of your experience, and knowledge and resources.
Some support groups are organized around disease conditions, like caregivers for people with Alzheimer’s, multiple sclerosis, or traumatic brain injury, Sometimes they’re employer-based or church-based. They can be online or in person, with online communities offering easily-accessed discussions. In every case, you’ll find people who understand what you’re going through—and, in many cases, you also may find lifelong friends.
Signs of Caregiving Stress
There are many signals that a caregiver is worn out from the unending pressure of the demands of caregiving. The Compassion Fatigue Awareness Project includes this list of symptoms and signs:
- physical and mental fatigue
- chronic physical ailments, like digestive problems and infections
- difficulty concentrating
- sadness, apathy, and the feeling that activities are no longer pleasurable
- bottled-up emotions
- recurring nightmares and flashbacks about a traumatic event
- isolation from others
- substance abuse
- compulsive behaviors like overeating, overspending, gambling and sex addiction
- poor self-care, like poor hygiene
- legal problems and indebtedness
These are common conditions among family caregivers. Do you recognize any of them? If so, it’s important to practice self-care to avoid burnout and continue helping those who depend on you.