What is Self-Care? | Year of the Caregiver

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What is Self-Care?

Dear Caregivers,

“Self-care is a continuous act of choosing to live your best life, no matter the circumstances.”

I am not sure where I first read this, or who said it, but I wrote it down, and it keeps resonating in me.

The definition of “self” is blurry these days. We are connected to each other in ways beyond our understanding. Some of us choose life partners or marriage, where two lives merge into one. And some of us have children, biological or adopted. These children are part of us, even though they are clearly separate from us.

Being a caregiver takes even another step towards blurring that line between self and other. Caregiving is an intimate relationship where someone else’s wellbeing and life depends on your commitment, your sacrifices and your love. We are advocates on so many levels; we make sure the person we are caring for gets their medication on time, we meet their basic physical needs, we interpret behavior with an aim to understand what they may be trying to communicate and we experience pain and loss right alongside them. And being a caregiver is so much more than this.

Pause for a minute and consider the phrase, “no matter your circumstances,” and ask yourself: “What does my best life look like?” Maybe your best life is right here and you are living it. If that’s the case, I am most certain, on some level, you are taking care of yourself. But if your answer is that you are not living your best life, or your soul longs for a different life, then I guarantee that taking some steps towards self-care will help you get there. And then, once you “get there”, sorry to say it, but…. You aren’t done! Self-care is “a continuous act of choosing”.

Here are some of my perspectives and lessons learned:

Acknowledge what you do. I see you. I see all the hard, beautiful work you are doing. So, set all your judgments aside and see you and your situation right where you are. No matter where on the spectrum of ability the person you are caring for is, acknowledge all you are doing in a day. You have most likely made some very difficult medical decisions for the person you are caring for. Your care is most likely 24 hours a day, 7 days a week. I think it is important to recognize just how exhausting caregiving can be and the slow insidious way that being a caregiver can negatively affect your health and life. You may physically feel heavy when you truly acknowledge all you have done, and are doing, as a caregiver. Take a deep breath, and know that you are not alone, and that many people live beautiful, joyful, extraordinary lives as caregivers.

Take care of YOU. All of YOU. Easier said than done. Sleep. Diet. Exercise. This is the aspect of self-care that I struggle with the most. Some days, or months, I find a good rhythm, but I find myself falling out of that rhythm often. I cannot stress how important it is to prioritize your own healthcare appointments, and get into the doctor when you are not well. I know you have all heard it, but we truly cannot take care of our person if we don’t first take care of ourselves.

Sleep. I don’t know about your loved one’s hypothalamus, but the part of my son’s hypothalamus that regulates his sleep and wake cycle thinks that daytime is nighttime and nighttime is daytime. Unbroken sleep at night only comes if I leave our house. Lack of adequate sleep is well known to contribute to all kinds of disease. Respite care, and alternating who gets up in the middle of the night with my husband, is the only way I can cope with this challenge of being a caregiver. If the person you are caring for is up regularly at night, work with a medical provider to explore possible ways to help the person you are caring for.

Diet is also an important aspect of our overall health. Prior to my son being diagnosed with HH, we had more time to cook meals and eat more nutritiously. I was a pretty “granola” mom. Now a healthy diet for our family means; keeping meals simple, going out to eat once a week and overall being more flexible. If you are struggling with your diet, or in a time of crisis, perhaps a friend can start a meal train. Some caregivers may be spending so much time focusing on the diet of the person they are caring for, that they find no time to sit down and eat a nourishing meal themselves. I am guilty of this, and always find myself forgetting to eat all together, stress eating, eating my kids’ left overs, or eating standing up. If you are struggling with your diet, a dietician who promises to meet you and your diet where you are at now could help. Another idea is finding some accountability in a friend. Making just one small dietary change for yourself, like making sure you get adequate water throughout the day, eliminating something that is in your diet that does not nourish you, or focusing on eating one nutritious meal for the day, can make a big impact on your life.

Exercise is well known to have all kinds of overall positive health impacts. I can always feel a direct impact on my mood, sleep and focus when I commit to exercise. If making time for exercise is challenging, consider if there is something you can do with the person you are caring for. I went through a period of being discouraged with how hard it was for me to commit to exercise. Something would ALWAYS come up that took priority over my run. When I started exercising with my son, I got back into exercising more regularly. I also rely on friends for accountability. Something else I have done is exercise while my son is at his therapy appointment. The most recent research I have read on exercise and health indicates that it doesn’t take a lot of exercise to have big health impacts on our heart and mind. Start small if you are not currently doing anything, such as 5 minutes per day. Caregivers have so many daily tasks to complete in a day, if you are going to add exercise to your “to do list”, choose a form of exercise that you ENJOY.

Emotions. The stresses of being a caregiver, and challenges we face to meet our own physical needs, make it harder to accurately recognize our emotions, process them in the ways we need to, let them go, or use them in a positive way to better our lives. While everyone’s experience as a caregiver is unique, there are many shared emotional experiences of being a caregiver. We sometimes (or always) fear for the safety of the person we are caring for. We feel sadness or helplessness watching our loved one experience a seizure. We live in a liminal space on a regular basis. One minute we are home, feeling joyful and laughing, and the next minute we are in the hospital because of a life threatening concern.

I think an important aspect of emotional wellness for caregivers is learning stress management. Once we accept our role as a caregiver, how do we live with the stressful things we cannot change about being a caregiver? I tend to look at stress in two ways. 1) Stress I impose upon myself, such as self-inflicted pressure, or perfectionism, and 2) Stress I cannot change, like the actual caregiving tasks, or fact that my son has rage attacks. While life will continue to unfold in ways that are out of our control, we can change the stress we impose upon ourselves, we can learn self-care tools and commit to self-care habits. Some of these tools and habits I explained earlier.

Stress imposed upon ourselves is something that doesn’t get discussed in American culture very much. It is rare to find people (caregivers and non-caregivers) who value doing “nothing”. It takes this slowing down, and doing nothing, to hear our true emotions and to start to understand the ways in which we inflict pressure or stress upon ourselves. Americans generally value the busy lifestyle over a slower, simple lifestyle. If you want to change the stress you impose upon yourself, there has to be some slowing down and listening to yourself.

Spirituality. Self-care is a spiritual practice. “Self-care is a continuous act of choosing to live your best life, no matter the circumstances.” Our shared circumstance is that we are caregivers. We each live our best life when we continuously choose to commit to self-care. In the spiritual sense, that is the practice of living true to our own personal values and beliefs. Some people have rituals to keep them coming back to their spiritual practice. Rituals can take many forms, such as prayer, singing, drawing, lighting a candle, or being in nature. Every step and moment we commit to caring for ourselves is a practice of spiritual care.

• Don’t do it alone. Through my work as a nurse, I have yet to meet one caregiver, who is caregiving alone, who is simultaneously taking good care of themselves. Families I work with who have good self-care habits and behaviors, have ALWAYS learned how to ask for help and utilize resources. There are a lot of reasons why people don’t reach out, or ask for help. Feelings of self-pride or independence (an American cultural tendency, especially of older generations), self-blame (this is my burden to bear), or not wanting to be a burden to someone else, are a few. If you feel lonely, isolated, or that you don’t have a support system that is working towards meeting your needs as a caregiver, let a friend and medical professional know. There are a lot of resources in communities that aim to support families and help caregivers. Often people need someone to teach them about all the resources that are available and connect them with those resources.

What Is Self-Care?

I would like to share with you what self-care has looked like for me this past week:

I sprained my ankle and have been grumpy about it. The injury has changed my routine and has slowed me down in ways I don’t want to. Self-care for me was saying, “You are right” to my family’s recommendation to get my ankle checked out. I saw a doctor and had an X-ray.

Self-care was sleeping on a little child size blow up mattress in the early hours of the morning to catch some extra sleep my body needed.

Self-care was slowing down enough to pick a lemon from the tree to put in our drinking water and marvel at its freshness.

I love being a caregiver for my son. He inspires me. He challenges me. I experience a lot of beauty in the ordinary because of him.

Be kind and gentle to yourselves fellow caregivers! When we find and hold dear what sparks joy in our lives we are taking care of ourselves and those we care for benefit in immeasurable ways.

Onward in love,

Guest Blogger – Cadie Olmsted

Cadie is a part time hospice and palliative care nurse, wife to a fisherman and full time fish biologist, and mother of two boys.

She lives in Albany, Oregon. She is grateful for our shared humanity, planet earth, poetry, free writing, moving meditation, and the radical love of Jesus.

She aims to raise awareness of the difficulties of raising a child with a complex medical condition, and the gifts and joy it brings.