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The role of caregiver can feel lonely, daunting and complicated – even when it’s to take care of a dear loved one like a parent. The job gets even harder when caregivers don’t take care of themselves in the process.
Susanne White knows that firsthand, and she wrote a book about it. White was a caregiver for both of her parents for four years between 2006 and 2010, and said there wasn’t a lot of information available about caregiving. Her new book, “Self-Care for Caregivers: A Practical Guide to Caring for You While You Care for Your Loved One,” (Simon & Schuster) addresses the challenges of feeling lonely, fighting against shame and guilt and taking a break to enjoy a hobby.
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Family caregiving can be a challenge – emotionally, mentally, physically and financially – for the person who takes on the role. Oftentimes, they knowingly sacrifice their own well-being for their loved ones, and don’t always practice self-care. This can be not taking time to eat a healthy meal, or contributing so much to the family member’s bills that they’re no longer saving for their own future needs. Even still, many caregivers feel guilt if they don’t think they’re doing enough, White said.
See: You may become a family caregiver soon, and not even know it
White spoke with MarketWatch about practicing self-care while caregiving, why it’s important and how to talk to family and friends about it. This interview was edited for clarity and length.
MarketWatch: Why is it a challenge on a personal level to practice self-care when a caregiver?
Susanne White: Caregivers in general are hard-wired to be caregivers and once you commit to take on the responsibility of the care of others, you really start to focus on them. And with all the great wonderful intentions caregivers have – they are extraordinary people – we put our lives on the back burner. There’s some kind of thing, where we’re bad caregivers if 100% of our commitment and focus is on anything other than the needs of those we care for. We are so concerned about keeping them safe and sound that that becomes the entire thing we focus on.
MW: What are signs of burnout?
White: The myth of caregiver burnout is you can avoid it and in my personal opinion, every caregiver in the world will feel burnout. It’s just the nature of the beast. All of us get burned out at one time or another. I always say it’s the same journey but we all take different paths, and I think as individuals, burnout means different things to different people. Burnout is a silent enemy. We need to learn and practice ways to really understand or know when we’re about to get to that point where we are burnt out and toast. If we hit the wall at 20 miles per hour instead of 150 miles per hour, the damage is not as bad. We can manage the damage.
MW: What does self-care look like, even if it’s different for everyone?
White: We are all individuals. We like different things. I believe for caregiver warriors, self-care is anything that we can do to make sure we are as balanced as we can possibly be. Self-care is anything we can do to make us better caregivers. We’re better when we’re rested, balanced, and calm. When we eat healthy. Like athletes, we have to be in shape and prepared, and have to practice being self-aware.
MW: You mentioned a caregiver tribe – what exactly is that?
White: Your circle of insiders. Your tribe, your troop. Caregivers understand other caregivers. There’s nothing like sharing stories with other caregivers – it is life changing. The important thing you can do is make sure daily you surround yourself with a tribe of other caregivers who will be there for you and you can be there for them. It is so much easier to do that. You have to be proactive, but I’d meet them in the grocery line. I would talk at the grocery store and say I was a caregiver for mom and dad, and others would say they were for their mother or their brother. There’s so many of us out there.
Find a group you can turn to, pick up the phone, share your story. I have cried and laughed so hard with other caregivers. Others who are not caregivers don’t understand if they’re not in the mix, in the battle. They don’t understand the sadness and anxiety and the fear or some of the hilarity sometimes, like dueling wheelchairs trying to get them into rehab at the same time.
Also see: Dementia caregivers have a steep learning curve. Here’s how to catch up – fast.
MW: How do you communicate your self-care needs with the people you care for?
White: My mom and I didn’t always get along. We butted heads all the time, and as she was diagnosed with early stages of dementia, I had to look back at the historical baggage of communicating with my mom. I had to realize she wasn’t going to change so I had to – I really started watching my reactions and started to begin to respond instead of react. I had to dig into my heart about why I’d get angry or feel guilty or shame. I had to do some work, with me looking in the mirror and finding new ways to behave and communicate as my mom’s dementia progressed and she became less able to communicate what she needed or wanted.
In telling people that you care for that you need more time or more space, it depends on the individual situation. But the initial thing you have to do is try to allow yourself to discuss your feelings with the people you care for. Caregivers may be surprised at the reaction.
I took an hour every Sunday to ride horses. It was an hour out of how many hours in a week? I felt guilty and worried about it, and I told my parents. They were so happy I took that time for myself. My dad would be waiting when I got home, asking “How was the horse today? How was he feeling?” You must not assume that those we care for don’t want us to take care of ourselves. Who wants to be around a snarky caregiver? Also, they may have an agenda of how they need to be cared for – sometimes we’re helicopter caregivers. They can’t cough without us running in the room. So having open communication with them is invaluable.
MW: You mentioned caregivers can feel guilt. What are one or two ways to change that perspective?
White: For some reason, we feel shame and guilt around taking care of ourselves. I don’t know where that message came from and I don’t know how to cure it, but I think it is a mind-set and the mind-set begins with this: you’re entitled to take care of yourself. If you get sick, who will take care of them? Don’t you want to feel better? Don’t you want to take a break? Don’t you want to stop criticizing yourself? Don’t you want to start trusting yourself? I tried to be perfect in the beginning. I wanted to do it all myself. Slowly but surely I realized I was doing the best I could – I deserved to write down what I accomplished today. I deserved to take a little time out of my day to sit quietly and do something I loved, to eat something I love that’s healthy. I deserved to reach out and ask for help. You’re not a bad caregiver if you ask for help. None of us can do it alone.
