The issue of how to stay positive and manage stress comes up a lot in caregiving. It is an important question because this is labor-intensive work, and it is far too easy to get exhausted, stressed, and burned out. We all know that caregivers do too much don’t care for themselves enough. We’ve repeatedly heard that oft-quoted story about how when you’re on an airplane and the oxygen masks come out, the instructions are to put your own on first before helping others with their masks. The lesson being that you have to care for yourself before anybody else, otherwise you won’t be fit to give care. Fortunately, this problem of self-care is being recognized – and addressed – by many excellent books, blogs, websites, and even the media. Most of us have seen the stock solutions offered, solutions such as; take breaks, exercise, eat right, meditate, pray, spend time with friends, or do something you love.
This is a timely warning, and these are excellent solutions, however, it’s not just the external, physical burdens of caregiving that are taking a toll. In other words, how much are we wearing ourselves down by the burdens we are carrying internally? I’m referring to emotional burdens like guilt, shame, and the need for control. We spend far too much time worrying about what might happen or what others might think, and feeling guilt and shame about the choices we make, the actions we take, and even about the things beyond our control. These thoughts and feelings can be insidious, exhausting, sneaky, ineffectual, and ultimately, harmful. Learning how to work with them instead of being at their mercy is crucial to success as a caregiver.
If there’s one thing I’ve learned about caregiving for any illness, it is that anything and everything can, and does, happen. The path that caregiving will take is about as controllable as a tornado and sometimes just as destructive – there is absolutely no way to predict completely accurately which direction it is going to go. We are also dealing with people, another uncontrollable and unpredictable force. The caree, family members, the professional caregivers, doctors, and administrators are all going to do what they are going to do. Why do we torture ourselves trying to control what is ultimately an uncontrollable situation? The best we can hope for is to be prepared for a few general actions, reactions, and events – there is no way to be prepared for everything and trying to do so only causes intense stress.
Worry, guilt and shame are empty emotions, and yet, we are so very good at inflicting them on ourselves. Worry, as a pastime, actually accomplishes nothing; it is a pointless waste of energy and emotion, better used elsewhere. The antidote to worry is decision and action, even if it is small and careful. If there is a problem, look at the options, make a decision, take some action, and let it go. Guilt can be useful in small doses, if it helps you to follow your moral compass, but it mostly functions as a self-torture device along with shame. Neither of these emotions helps us achieve anything or spurs us to action, they are just emotional burdens we carry that wear us out and make us feel bad about ourselves.
I read the blog post of a caregiver who, like me, placed her father in a facility, for very good reasons. Not only did she feel guilty that she now had more free time, she felt guilt and shame for not caring for her father herself and was worried about how others would react to her ‘ditching’ her father. I remember those feelings of guilt and shame so well. Was I doing this right? Would people think I was a bad daughter for not spending more time with Dad? Was it wrong to have boundaries? And, of course, would people think I was a bad person for putting Dad in an assisted living facility? Where do all of these internal voices come from? The ones that tell us to give up so much of ourselves, or that only one way is the right way, or that if we don’t control everything, it will all fall apart, or even that we should feel guilty for wanting to live our own lives? Wherever they come from, it is time for a new directive: Expect the best, and prepare for the worst. That way you’ve got everything covered!
So, yes, reduce your stress by taking care of yourself physically; take a mental break, talk to a friend or go to a movie. You have to put yourself first, otherwise there will be nothing left of you to help others. You were given a life that is just as important as your caree’s and you deserve to live it. While you’re doing that, take a good look inside yourself and see much space and energy worry, guilt, and shame are taking up – it might be time to kindly ask them to leave so you can fill up the space with self-love, positivity, acceptance, patience, sorrow, and love for your care.
Joy Walker is a writer, caregiver advocate, hospice worker, bereavement counselor, and professional care-manager for her Father, who suffers from Lewy Body Dementia. She is a support group facilitator and call counselor for the LBDA. In 2011, she published a memoir, 3 Years and 13 Dumpsters; Cleaning Up After Dementia, about being a caregiver. She also maintains a popular blog and forum, http://cleaninghousebook.blogspot.com, providing caregiver support and information about caregiving, end-of-life issues, and Lewy Body Dementia, which was featured as one of Caring.com’s 18 Great Caregiver Stories on the Web. It was voted one of Healthline.com’s 25 Most Popular Dementia Blogs of 2012 and 2013, and was a finalist in SeniorHomes.com’s Best Individual Health Blogs of 2013.