The month of November marks the beginning of another National Family Caregivers Month in the United States. You may wonder what a family caregiver IS and why anyone would set aside an entire month to recognize them. You may not even realize that this month is set aside to celebrate YOU. Neglecting caregiver self-care can prove deadly, so follow along this month as we explore ways to take care of yourself during your caregiving seasons.
Are YOU a Family Caregiver?
Even if you don’t see yourself as a caregiver, stick around, because chances are, at some point in your life, you’ll end up caring for a family member in addition to all that you already do. Maybe this definition will help you understand a bit more about family caregivers.
A family caregiver receives no pay or compensation for assisting and caring for a family member (or friend) during a medical crisis or throughout a long-term illness.
For example, if you care for a spouse who has dementia, that makes you a family caregiver. If you care for a child with a life-threatening disease, that makes you a caregiver. Maybe you and your siblings share the responsibilities of financial management for your elderly parents—that makes you a caregiver. Perhaps you have a friend who has no family members close by who needs weekly rides to doctor’s appointments or the grocery store—that makes you a family caregiver.
A family caregiver provides care beyond the regular care that family members give each other. In my two caregiver seasons, I wore the following hats: nurse (giving injections and supervising complicated medicine routines); advocate (fighting with insurance agencies and arranging professional care); companion (countless UNO games while my husband recovered); coach (helping my daughter and husband as they transitioned to caring for themselves); cook (preparing meals that met the dietary requirements of the hospital); security guard (making sure visitors followed proper procedures for visiting a neutropenic patient), family CFO, and travel agent.
I’ve probably forgotten some of the roles I played. But I did all of these things while holding down a full-time job and caring for other family members.
What Happens When Caregivers Neglect Self-Care?
Notice that I don’t mention caring for myself. Therein lies the problem for those who take on a family caregiving role. Depending on the needs of the one(s) you care for, you may discover that you neglect caring for yourself. Unfortunately, this leads to more serious problems.
During my first caregiving season, my husband had a catastrophic case of cancer (rare with a median survival rate of 2 to 6.5 months once diagnosed) that required treatment in a hospital a thousand miles from home. I taught full time, traveled to be with him every time he had a crisis or a major procedure, and tried to hold everything together for our two young daughters. My parents moved in to help, and my dad subbed for me each time I had to leave.
It took Pedro about a year to regain his health and strength after cancer.
I often joke that it took me ten years to recover from his cancer. I suffered from depression, weight gain, and a host of other stress-related physical symptoms—and I had no idea that any of it had anything to do with caregiving.
According an article on the Family Caregiver Alliance’s webpage, unpaid family caregivers are at a higher risk of depression. In fact, FCA reports that “between 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one-quarter to one-half of these caregivers meeting the diagnostic criteria for major depression.”
Other reported symptoms include anxiety, high levels of frustration, loss of verbal IQ, and short-term memory problems (I called these symptoms ‘chemo-brain by proxy’). Bottom line? When caregivers neglect self-care, they put their own health at risk.
Caregiver Self-Care Includes Counseling
I remember crying through (the ugly, snot-cry kind of cry) the book The Last Lecture by Randy Pausch. Pedro had survived his autologous stem-cell transplant, returned home, and spent a school year homeschooling our girls. Someone thought I might enjoy the book, because it was about cancer. (I don’t understand that logic, but that’s another topic).
Randy Pausch didn’t survive his bout with cancer, but with the help of grief counselors (for him and his family), he managed to live his last months of life on his own joyful terms. I remember tossing the book down in disgust and wailing, “Why didn’t anyone suggest counseling for us?”
Our local hospital had one oncologist (who had never treated Pedro’s type of rare cancer before), no cancer support groups, and no one cognizant of the fact that family members and cancer patients could really benefit from additional support. The hospital chaplain (a friend of ours) visited when she could, and her prayer group and church helped us out financially a time or two.
Once Pedro transferred to San Francisco, a transplant counselor met with us once, but she didn’t even have the right information about what kind of transplant Pedro would receive. When she started asking him how he felt about having someone else’s stem cells in his body, I gently stopped her and informed her that they would use his own cells. She had to call someone to verify.
The one hospital chaplain’s visit left Pedro and I in stitches (and shaking our heads at the absurdity of the visit).
Coping vs. Counseling
Because I didn’t have anyone to guide me through the caregiving season (and no previous experience), I picked up all kinds of bad coping habits: Eating, bidding on e-Bay, eating, feeling sorry for myself, eating, and did I mention eating?
A few people would ask, “How are YOU doing?”
“Great!” I’d reply. After all, I had so much to feel grateful for. Our kids were safe with my parents, Pedro hadn’t died, and Visa approved a new credit card so I could keep up with the expenses.
By hyper-focusing on Pedro’s needs and condition, I managed to avoid (or so I thought) stress. But I really needed support from a counselor to help me work through my angst honestly. I needed to have a safe place to break down and admit how Pedro’s illness impacted me. Our children should have had counseling as well.
If you’re going through a caregiving season, find a counselor (or at the least a support group moderated by a counselor).
Develop a Self-Care Mindset (BEFORE You Become a Caregiver)
Many people neglect forming healthy self-care routines, which can lead to burn-out, stress, and other health problems. Get over the idea that self-care equals self-indulgence (it doesn’t). Self-care simply means that you recognize that you have mental, academic and artistic, physical, and spiritual needs that replenish your supply of you.Get over the idea that self-care equals self-indulgence--it doesn't! Learn how to take care of your self so that you have fuel to take care of others. #caregiver #selfcare Click To Tweet
Think of it as visiting a gas station and fueling up. If you don’t put fuel in your car, it will stop running. When you mindfully meet your needs for mental, academic and artistic, physical, and spiritual wholeness, you will have the fuel it takes to meet the challenges in your life.
If you make a habit of practicing healthy self-care before a crisis arises, you’ll find it easier to navigate the crisis. You’ll have reserves for dealing with disaster and a plan in place for continuing self-care. But if you’ve never practiced self-care and find yourself caring for a family member, it’s not too late to start.
You can sign up for the caregiver self-care challenge here. You’ll receive five emails that coach you through easy, actionable steps that take five minutes a day and help refuel you so that you have what it takes to care for a family member.
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