Seven Practical Tips for Caregivers
By Joel Hughes
It took me a year or so into Rebekah’s diagnosis to recognize myself as a “caregiver”. At some point in our marriage, I just went from a husband to a husband and a caregiver. I’m not too hot on the word caregiver, but that’s the world our current culture uses for the role I play.
The more that Rebekah’s cancer affects her, or more accurately, the more her treatments (i.e. chemo, meds, etc.) affect her, the less she can do and the more falls on my shoulders. Caregiving brings its own unique challenges, stresses, and temptations, and if we are not careful, we will burn out, or worse. Trust me, I’m kind of a pro at doing both from time to time.
The editor for Breast Cancer Awareness Magazine published two articles on Rebekah and me. She later emailed me and asked me for a few tips that I could offer to caregivers. The seven tips below are what I emailed her back.
When cancer hit my dad, I secretly carried guilt because I thought maybe I had caused it through stressing him out. I had to realize that if stress caused cancer, most of America would have cancer. My dad’s cancer came from something awry within him, not something I did.
But we are not responsible to heal our loved one with cancer. We are not responsible to find the magic cure through our research, through preparing the healthiest meals, through keeping stress down, and through any other number of things we think we have to do in order for them to get better. Caring for them may be our responsibility as a spouse, adult-child, or parent, but healing them is not on our shoulders. Like everyone else, their life is in God’s hands, not ours.
Caregivers have their own unique challenges, stresses, sorrows, losses, and even temptations. You need to take some time for yourself so you can continue to be strong for them. It's okay to be selfish! You don’t have to go to every doctor’s appointment, every treatment, and every pharmacy run (that is, if you don’t have to). It’s okay to ask for help from friends and family. The ladies at our church have rallied behind Rebekah and me, and sometimes one of these blessed angels will take Rebekah to one of her appointments.
I admit, this is a tough one for me because I feel like a failure to her if I don’t do everything. But it’s good for both of us to either have some alone time or to interact with other people in the outside world. Too much time alone together causes a loss of objectivity.
Think about the last time you flew on an airplane. When the air stewards (not sure what we call them nowadays) go over the safety instructions, they always tell you that if the oxygen masks fall, make sure you put yours on first before your kids. Seems counter intuitive and selfish, right? Well, the logic is that if you take care of yourself first, you will be in a better place (i.e. not passed out!) then to take care of those around you. The same logic applies for caregivers. Do what you need to do so you can remain strong. I know, easier said than done.
That's Okay! See it like a red light on your car dash. Something's out of whack and needs attention in your life. That’s the time to step back and maybe invest in some self-time.
There will be days (or more) where you get frustrated, even pissed off. There will be days where you lose your temper. There will be days where you feel overwhelmed and depressed. There will be days where you feel strong fear and anxiety. I’m telling you this from experience! It’s not like I’m some professional writing about caregiving. I experience all these emotions more than I wish. There are times when I blow it and times where I fall. I’ve shared this in all my books, so it’s no secret, but my sucky go to vice is alcohol. All these underlying feelings of frustration, anger, depression, and fear tempt me at times to check out and drink up. That’s me knocked down.
If you’re a caregiver, expect to get hit and maybe even knocked down (whatever that looks like for you). The key, I’ve learned, is to get back up, apologize, and keep moving forward positively.
It’s easier said than done. This goes back to Rebekah and I living life in our own little cocoon and losing objectivity of life in the real world. Prolonged isolation breeds mold in your hearts. Bad things start growing in there and eventually, they will work their way out into your personal life and then relationships.
The older I get, the more of a homebody I get. I like staying home. I like getting cozy on the couch with my favorite shows and just checking out. There are many times that we both need this. I don’t harbor guilt over it. But Rebekah and I both realize how important it is to our health that we get outside, that we take walks, that we reach out to others and spend time with people. We are both introverts and too much people time kills us, but no people time equally kills us. After we’ve drugged our feet to church or our home fellowship group or someone’s birthday party—or even just a trip to Walmart—we seem to have a bit more of a skip to our step. For many caregivers, it takes work, but it’s work that pays off.
If you’ve been walking the cancer or illness journey for a while, you remember that when your loved one was first diagnosed, everyone was there with cards, flowers, sympathy, and help. But over time that well dries up and most of these well-wishers go back to their “normal” lives. Some of them you never hear from again!
It’s far easier to ask for help in those early days than it is three years down the road. We feel like we are wearing out our welcome and worse, becoming a burden. While that may be how we feel, it’s not typically how others feel. We have learned that most people are still very willing and wanting to help. But most people don’t know how to help until we ask them or tell them. Your family and friends want you to tell them how they can help. What we are learning to do is humble ourselves, find the courage to break out of our comfort zone (our cocoon), and reach out to people when we need help. Guess what? When we do this, it always turns out good! Remember, people want to help you, they just need you to start and show them how.
This is tough for me as well. As a caregiver, you will experience many uncomfortable emotions, like fear, anger, and loneliness. For me, loneliness is the biggest one. Cancer takes my wife out of the game of life much of the time, leaving me to do much of the life work, and thus feeling very alone.
You want to be that strong person sometimes, but not all the time. Trying to be robot strong all the time will not only lead to your downfall; it will deaden your relationship with your spouse. Try to live as you did with your spouse before the cancer. Your loved one NEEDS you to be real with her and still treat her as though she is an adult. They NEED this, otherwise you’re just playing pretend life.
We have to allow ourselves to be open, honest, and yes, vulnerable. This is most important for married couples. Your spouse or partner with cancer NEEDS to care for you too. Allow them to care for you! Allow them to do things for you. Vulnerability and mutual need will bring life to you, your partner, and your relationship.
This goes back to taking care of yourself. Take that trip with the guys for the weekend. Take that day out with your girlfriends. If possible, treat yourself to that thing you’ve wanted for some time.
If married, continue to work on having intimacy. Cancer and illness can make this a great challenge, and it’s all too tempting to shelve this part of your life. Don’t. You will die. Your relationship will die. You may need to get creative and work through some uneasy conversations, but do it. Just do it!
To Learn More and find further encouragement as a caregiver, check out my book In Your Corner: A Caregiver’s Survival Guide to Life, Love, Cancer, and Hope. To learn more or get a copy, visit: http://www.inyourcornerbook.com/