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Karen Sewell

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5 Things a Caregiver Should Know

Posted: 09/29/2013 8:02 am

There is a lot of information out there about how to be a cancer patient. Drink this. Inject that. Have this surgery. Stay away from these.

There's no guidebook giving instructions on how to be a caregiver. There are no physician consultations to tell you what the next step is in how to provide moral, physical, and emotional support to the person you love that has just been diagnosed with a possibly fatal disease. There are no rules about caring for yourself.

Having been a caregiver for nearly three years to my late husband, who was diagnosed at the age of 22 with stage III testicular cancer, I've been around the block. Here are five things I learned that I hope will help guide other caregivers in your heart-wrenching predicaments everywhere:

1. It's okay to freak out for yourself.
You're already freaking out for your loved one. That one comes naturally. What takes a little bit more consciousness and effort, is to allow yourself to lose it all, come totally unglued, fall apart... all over how this diagnosis is affecting you and your life. You're a person, too. Yes, with needs. Your world just got rocked and while you're busy holding it all together in support of your loved one, you forget how to let go and let your feelings matter, too. I'm here to tell you that it's not just okay to allow yourself to feel and experience the magnitude of what you're dealing with, it's something that I encourage you to do, for your own sake.

2. No one, including you, really knows how to help you.
People mean well. Friends and family will offer to help in whatever ways they can and all you have to do is let them know how they can help. The thing is though, that you have no earthly idea what these people can do to help ease your pain or make your life easier. If you can figure out ways to allow these people who love and are worried about you to contribute, let them. Ask for dinners to be brought over on chemotherapy days so that you can spend the day in the clinic or hospital without having to worry about preparing a meal when you get home. Let someone know which closet you keep your vacuum and broom in and let them clean your floors while you go grocery shopping. Let that overbearing neighborhood mom who always seems to have it together take your kids for a play date -- maybe letting her deal with your kids for a couple of hours for a change will take her down a notch or two. And if you really can't figure out ways to let people help, don't sweat it, because it's not worth the added stress.

3. It's normal to lose friends after a diagnosis.
Just like people don't really know what the best way to help you is, people also don't know how to react to the news you've shared with them. Cancer makes people uncomfortable, whether they mean to let it or not. Now that you've got your hands full with chauffeuring your loved one to doctor appointments, heading out in the middle of the night for last-minute prescription refills and learning an insane amount of new terminology, you've got no time left for lunch dates, mommy-and-me outings or long phone calls just to catch up. It's not going to be an immediate priority of yours to keep the lines of communication open, but when your friends stop hearing from you they won't realize that you didn't even mean to stop calling. They'll figure that you're too busy, and you are, but they won't want to bother you so they won't call either... and it just cycles. They'll check in on Facebook and read the blog that you keep to document your journey, but since you're dealing with something they can't understand, and you're pretty hush-hush with them about the whole ordeal, it's only natural that you'll grow apart. Hopefully the bond that you had pre-cancer is strong enough to take the hiatus hit, and if it's not, at least you've discovered who your real friends are.

4. You're going to become extremely close with your loved one.
In my situation, this was one of the few benefits I saw come from my husband's diagnosis. There were some ugly things that I saw happen to my husband, and his knowledge of my awareness led him to trust me more than he ever had. He knew that he didn't have to feel shame or embarrassment around me. He knew that he could cry and I wouldn't judge him. He knew that by smiling at me he was giving me all that I needed to get through that day. From a medical standpoint I knew him inside and out. There was nothing that his body did that I wasn't fully aware of, and while it was rarely glamorous, I never minded because I knew that I was the only one he had allowed in this far.

5. When it's all over, it's going to take you a while to get back to normal.
Together, my husband and I went through numerous remissions and recurrences. During the times we thought we were finally free, we both wanted to jump back into life and pick up right where we had left off. It wasn't always as easy as that though. We were both college students, and sometimes we were ready to go... in the middle of the semester. We both wanted children, but because of his treatments we were forced to proceed with in vitro fertilization, which was costly and time consuming and not at all in line with our desire to pounce back into a full life. When my husband died from his illness, I was pregnant with our twin girls and whatever "normal" I thought I could ever have in my life went right out the window. Fortunately, with some time behind me, I've found ways to enjoy life again. It's taken patience and perseverance but I've achieved much of the normalcy I longed for when we were in the thick of our experience. There's no rushing this process, dear caregivers, but if you trust that you'll get there, you will. You know all about taking things one day, one appointment, one treatment at a time. Baby steps. You'll get there again.

To read more about Karen's experience with cancer and the hope-filled life she leads now, visit her personal blogs here, here, and here.

For more by Karen Sewell, click here.

For more on death and dying, click here.

 
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