(Editor’s Note: We continue sharing 10 tips for family caregivers each day. Today, Elizabeth Scarboro, who cared for her husband, shares her tips.)

night_starsWhen I was a teenager, I pictured myself living an adventurous life – moving from country to country and boyfriend to boyfriend. But unexpectedly, I fell deeply in love. Stephen was funny, smart, sort of mischievous – like lots of seventeen-year-old boys. But he was very different, too. He had cystic fibrosis, and though he was healthy when we met, he knew that he might not live past thirty. I had to admit to myself that I loved him dearly, and that if I wanted to be with him I couldn’t go travel the world and then get around to it. I had to hurry up. We moved in together after college, and got married when we were twenty-five. We did lots of things couples in their twenties do – we hiked, biked, stayed out late with our friends. But when Stephen’s health hit a steep decline, we started to live a double life. We navigated hospital stays, the side-effects of medications, and major life decisions. As he got worse, we were forced to face the fact that I was helping to take care of him, even if we would have rather just been husband and wife. It was a grueling time. We fought a lot, and yet in a way, we’d never been closer, trying to face his illness together.

Looking back on those years of caregiving, I realize there are a few things that truly got me through. Some are quite small, and might not make a difference for others, but they sure made a difference for me. These tips aren’t meant as a to-do list – as a caregiver you already have too much to do! They are just small daily things that helped me, which I’m passing on in case they speak to you.

1. Listen to music

When Stephen had a double-lung transplant, he needed someone with him 24/7. I was used to having my own life, my own job, and now I found myself at home, with lots of small details to attend to. I started putting on music first thing in the morning. It was soothing or invigorating depending on what I chose. And more than anything, it helped me feel. This was a time when I wasn’t up for lots of ‘how are you?’ conversations – I found my life, and my feelings, difficult to talk about. Music was the perfect emotional release.

2. Take a twenty-minute walk

Or longer if you can get away with it – the more time spent outside in the fresh air the better. Even when I lived in places that weren’t beautiful, I found that just getting outside, noticing the sidewalk and the slant of the light, helped me take a break.

3. Talk to one friend or family member a day

It never feels like there’s time for a phone call, but it can be a quick one. I had a deal with friends (and still do) that it’s fine to just call for five minutes to say hi. Often the conversations are longer, but they happen more often because we don’t feel we need to set half an hour aside.

4. Same goes for your spouse

I didn’t pester Stephen to make calls when he wasn’t up to it, but I tried to encourage him to keep up with family and friends, and encourage them to keep up with him. I noticed that he was always happier when he got off the phone.

5. Do something you like together

Sure, easy for couples where both people are healthy. But I found that even watching a dumb movie and eating ice cream together at the end of the night was really good for our marriage. Anything that we both enjoyed that wasn’t illness-related.

6. Do something you like on your own

People are always telling us to take care of ourselves, and it can often feel like that’s easier said than done. In fact, it can feel like one more ‘should’ to add to the list. So if it feels like that, start small. Do a little gardening, read a chapter of a book, pick up the instrument you abandoned in high school and stumble through a few songs. It doesn’t have to be a three-day getaway if that’s not possible. Sometimes twenty minutes spent doing something you love can be enough.

7. Keep your own tastes in mind

It’s a very small thing, but as a caregiver it’s easy to forget yourself in many ways, and your tastes can help fight that. Cook food that you (not just your spouse) will look forward to eating. Choose a movie that you think you’ll enjoy. Subscribe to a magazine that appeals to you.

8. Argue if you need to

One of the hardest things about being a spouse and a caregiver is that the roles conflict with each other in painful ways. As a spouse, you need a partner – someone you can share your difficulties with. And yet, what if those difficulties stem from your caregiving role? How do you talk about this with your spouse, who is having an even tougher time, and who may already worry about you? A friend once gave me advice about this. She told me to treat the illness like a third party in the relationship – something both my husband and I could be mad at. At first I thought it was silly, but then I realized there was truth in it. I wasn’t upset with Stephen – I was upset with his illness, with our circumstances. And even though the conversations we had about that were painful, I think they helped us know each other better, which helped us feel like we still had a marriage. Of course, there are times, and illnesses, which make these conversations impossible. Which leads me to:

9. Find one person you feel comfortable confiding in

I went through periods where I felt I couldn’t tell anyone how bad it was. This might happen for all caregivers, but I think it’s especially true for spouses. In general, people are private about their marriages. And it can feel like a betrayal to talk about difficulties you are having with your spouse, especially since your spouse is not in any way trying to make your life difficult. He or she isn’t having an affair or treating your child in a way you don’t like or spending money irresponsibly. So you might feel guilty about your own frustrations, or defensive at the thought of others seeing your spouse in an unflattering light. But it’s important to break that isolation. Find that one nonjudgmental friend, that pastor, that sister who’s gone through her own rough time. I was scared to start those conversations, but I always came away from them feeling lighter, more clear-headed, and less alone.

10. Night ritual

I’ve never shared this with anyone, but for some reason I’m compelled to share it with my fellow caregivers. I think because even though I risk sounding cheesy, it did indeed get me through. It got me through both Stephen’s illness and his death, when I was twenty-nine. In my life now, with my second husband and two kids, it still gets me through. At the end of the night, every night, I take a few minutes to go outside by myself. I look up into the sky, and think about how small I am in the scheme of things. I don’t consider myself very religious, but maybe it’s something of a prayer. I think about my day, and beyond my day – what and who I care about, what and who I’m thankful for. No matter what’s going on, I find I’m still glad to be here for it, to be alive on this earth. I feel that for a while, and then I go back inside and snuggle up under the covers.

About the Author: Elizabeth Scarboro is a writer, teacher, parent, and daughter. She is the author of the memoir My Foreign Cities, about her marriage to her first husband who had cystic fibrosis. To learn more about the book, find health-care-related resources, or get in touch with Elizabeth, visit elizabethscarboro.com. You can also reach her on Facebook at https://www.facebook.com/myforeigncities.

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Elizabeth Scarboro
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Thanks, Richard, so glad I could add to your list. Now I need to go read all of your tips! Hope you enjoy the holiday season, too.

Helen
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Helen

I’d like to add to your wonderful list:

Ask for what you need and be direct about it. People often want to help, but don’t know how to approach you, or what kind of help they can offer. Don’t be shy. The worst they can do is to say no, and if you are the spouse/partner of a catastrophically ill person, “no” will glide right off your back.