Henry and Flora were married for 45 mostly blissful years before crisis arrived. Though they had argued over money and child-rearing concerns years earlier, they’d gotten along like the best of friends in the decades since their kids had left home. They enjoyed travelling, visiting their grandchildren, having dinners with other couples, and sitting down together to binge-watch shows.
Over time, however, Henry began noticing that Flora was becoming more forgetful and seemed confused and disoriented at times. His worst fears were realized when a neurologist diagnosed her with dementia. He felt devastated. He didn’t want their relationship to change and was afraid of ultimately losing her.
Because he loved her and wanted to protect her, Henry was determined to be her devoted caregiver. He made all the meals and took over doing all the driving, shopping, laundry, and cleaning. He started to manage the calendar for medical visits and everything else when he saw that Flora was no longer able to. He called the children and put her on the phone so she could say hello to the grandchildren.
As her dementia progressed and he became more immersed in his role as a caregiver, Henry lost sight of his own needs. He stopped going to the gym because he didn’t want to leave Flora alone. He stopped seeing friends because he felt that other couples might not want to go out with her now that she had a dementia diagnosis. They stopped travelling, even to see the grandkids. They could still binge-watch TV programs together, but Henry could see that Flora couldn’t really pay attention to the shows or talk about them afterward. He felt very alone.
As the months and years passed, Henry began to suffer burnout. He woke each morning with an awful pit-of-the-stomach feeling of dread about all the caregiving tasks he had to complete that day. He struggled to keep his energy level up. He stopped caring about his own health, neglecting to check his blood pressure or make doctors’ appointments for himself. He knew he was having a hard time but felt too ashamed about needing help to ask for it, even from their adult children. As he sank into despair, he became more irritable when Flora made mistakes and then would feel terribly guilty about snapping at her.
Preventing Burnout
Henry’s distressed state is not one most caregivers can sustain. Burnout eventually makes it nearly impossible for them to endure the emotional and physical demands of caregiving, and many simply cease being caregivers, even if that means placing their loved ones in institutional settings. That was the last thing that Henry wanted to happen with Flora.
Preventing burnout is crucial so that the caregiving can continue. This requires planning ahead and anticipating that the caregiving will become more challenging physically and emotionally as the care receiver’s dementia progresses. We strongly suggest that caregivers honestly evaluate how they are handling it and pay attention to the signs that they are struggling. Here are some important tips for countering burnout.
1. Understand the Risks
You need to go into caregiving with some understanding of how stressful it can be and plan for how you will handle that stress. When we have heard caregivers, especially spousal caregivers, tell us that they will just push through the stress to do what needs to get done, we become concerned that they are setting themselves up for eventual burnout. Know the risks and respect them by making prudent choices from the beginning.
2. Accept Help
Some caregivers feel that if they accept or seek help from others, then they are somehow shirking their caregiving duties. But utilizing help is a key way of warding off burnout and remaining resilient. Use all the help that is offered. When asking for assistance with specific tasks, strategize which family members, friends, or neighbors may be willing to pitch in and then show up. Consider whether you can afford to hire help, such as a personal care aide, when needed.
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3. Connect With Others
There are few better ways of preventing burnout than talking with other people who understand and care about what you are experiencing as a caregiver. There are caregiver support groups in many communities, held at hospitals or churches, as well as an entire universe of online groups on Facebook and other platforms. For example, the AARP Family Caregivers Discussion Group on Facebook has over 22,000 members who are eager to listen and give advice and emotional support. It can help to speak to a psychotherapist for support, too.
4. Practice Self-Care
Remember that self-care allows you to be healthy enough to continue to care for your loved one. Make sure you go to your medical appointments. Find time each day to exercise, talk to friends or family, and do something that rejuvenates you.
5. Focus on Balance
Remember that the goal isn’t to be the perfect caregiver—it’s to be good enough. You have to have boundaries and balance what you do for your loved one with your own needs.
Many caregivers, like Henry, are on a heartfelt mission to care for their loved ones. To make the mission successful, they must get their own needs met so that they are able to meet the often increasingly challenging demands of caregiving.
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