I’ve never been a caregiver for someone with cancer. I’ve only been the one receiving the care and needing it. However, one thing I’m pretty sure about is that people with a brand spanking new diagnosis have very little idea about what they need.
I needed attention. I wanted to be left alone.
I wanted my husband at the doctor’s office with me. I resented my husband having any interaction with the doctor at these visits.
I wanted everyone to know that this diagnosis was rocking my world. I wanted life to be normal.
I wanted distractions. I was furious that others could be distracted.
I was terrified and wanted to know everything would be ok. I felt I was being patronized when I was told everything would be ok.
My husband and daughter have never complained (at least not to me) about the emotional tornado I was during those first few months, but I know I was a challenge. It was clear to me that my husband wanted to comfort me, but it was impossible for him to do so. Every single thing he did (or didn’t do) frustrated, irritated, sometimes infuriated me.
Cancer happens to groups of people, families, friends, work colleagues. It’s never just the person with cancer who’s affected. Everyone in their circle is affected, too.
These people, especially our caregivers, matter. While I was being whipped around by fear and confusion, my family was experiencing their own emotional whirlwind. The big difference here is that very little attention was directed towards them, especially early on.
It wasn’t just my need for comfort that mattered, it was also my husband’s need to be able to comfort me that mattered. Caregivers want to make things better, and these are 5 things people with cancer need from their caregivers
We need you to listen. So, here’s the problem. We says things that we don’t mean. We say, “Leave me alone.” We might mean, “Leave me alone, but stay in the room.” or “Leave me alone for 5 minutes.” or, even, “If you leave me alone I’ll feel abandoned.” or “Leave me utterly alone in a mountain cabin off the grid.” How can you possibly win? Honestly, you probably can’t win, but you can keep listening. Just because we say something on Monday doesn’t mean it remains true on Tuesday. Keep asking and keep listening. Eventually we’ll begin to understand what we need and want and you’ll learn to read the signals. The important thing is to keep the communication open.
We need you to know that we have no control over our bodies and it scares the hell out of us. Cancer changes everything. Treatments affect our taste buds and our moods. We want to be normal, more than anything in the world, but normal is gone. If we can’t eat the food that you’ve labored over, please know that we aren’t rejecting you. A friend of mine said that during chemo she couldn’t cope with sweets. Even a banana was too sweet. Another friend only has a taste for apple pie. That’s all she can eat at the moment.
We need you to accept help from outside the family. When people ask what they can do, give them specific suggestions, such as taking the kids to the movies, walking the dog, gathering up the dry cleaning and dropping it off/picking it up. All of us need the support and folks in your circle need to be able to give support.
We need you to find us a support group for people with cancer. It might be the case that the person you’re caring for would never attend a support group or visit a counselor. However, you can locate both of these and make it easy to arrange a meeting. Frankly, the only people who offered me true comfort were other cancer survivors. We can’t tell you what we’re feeling because we want to protect you. We can tell our support groups.
We need you to take care of yourself. Cancer is relentless, more like a marathon than a sprint. There’s no point in ruining your own health and wellbeing. You need to exercise, be with friends, watch television, listen to music. Find time to do those things. When people ask, “Can I bring you a casserole?” Say, “No, but can you call Kerri and meet her for coffee?” And then, plan something for yourself.
For the record, caregivers need as much care as folks with cancer. You need a support group, folks who know what you’re dealing with and have concern for you. You’re scared and confused, too.
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