A Few Miles in the Shoes of Caregivers and How YOU, Can Care for Caregivers

IMG_6994“What day is it?” I wake up in a panic. “Is this a treatment week, a side effect week, an off week or a work week?” I check my calendar. Whew. An “off” week. Good. That means it’s a week to catch up on “stuff”:

  • Laundry. (Which is “enhanced” by treatment side effects.)
  • Grocery shopping.
  • Haircut.
  • Nails filled. (yes. These are things I do. They are like car care for me. My daily life takes less time if I keep these two things up. It’s not really a break. Or even a treat. It’s like getting the oil changed on my car. Maintenance. It’s much faster and longer lasting to get my nails done. trust me. And a good haircut= almost no time to do my hair.)
  • A break at the bookstore or out to lunch for a few hours alone. So I don’t go insane.
  • Sort through the stacked up mail.
  • Groom dogs.
  • Housework.
  • Make sure my kids are ok.
  • Go to MY doctor’s appointments.
  • Take kids to their doctor’s appointments.
  • Make sure my in laws have the supplies they need. (they’e in assisted living.)
  • Did I mention housework?
  • Volunteer work. (keeps me sane and connected to the outside world.)
  • Writing. (again- sanity and calling.)

“Sigh” I already know I won’t be able to get through the whole list. I’ll do what I can.

Treatment weeks, involve:

  • Looooooong cancer center days. (As in- Oh my lord, I will lose my mind if I have to sit here another minute, even though I have packed enough “busy work” to keep a toddler occupied through an international flight- long.  I AM a giant, bored,stressed toddler at the cancer center.)
  • Pizza nights.
  • Crockpot dinners.
  • Side effect watches as intense as tornado watches in Kansas.
  • Being the “water pusher” Enough water must be drunk to flush system…..I am the keeper of the water.
  • Side effect med reminding. (Sometimes side effects sneak up you. It’s better to head them off at the pass. I am in charge of helping recognizing side effects early on. )
  • Clean up duty.
  • Sanity and normalcy keeping. I try to maintain as much “normal” as possible in these weeks. Treatment weeks also bring up the reality of my husband’s cancer over and over. The entire families emotions are effected.

Side effect weeks: The weeks after treatment when side effects are raging.

  • All of the above while feeling: helpless. Afraid. Stressed. Overwhelmed.
  • Try to help and encourage hubby as he works through his side effects.
  • All the normal stuff. (Funny, cancer doesn’t get you a pass on the normal stuff. It still has to be done.)

Work weeks:

  • I maintain everything at home so my husband can focus on working.
  • I try to handle things before they are a problem.
  • I handle my regular duties -plus… what ever life throws at us. Puking dogs, cranky neighbors minor crisis’ etc.
  • Cook actual meals.
  • Housework.
  • Laundry.
  • Chauffeuring and trying to make a summer or school day “normal” and “good.”

There are days when Caregiving is a triple time job. There are days when I have more than I can possibly do, and things just don’t get done. There are also horrendously boring days.

There are days when caregiving takes a backseat and life is more normal. (ish.)

Being a caregiver is like working a crazy swing shift without pay. The hours and responsibilities change every day. So do the emotions.

Somedays I feel like “I got this.” Other days, I feel like “I can’t do this, and quitting isn’t an option, but losing my mind, might be.” Somedays, I see Jesus everywhere. Somedays, I wonder if he’s on vacay. Somedays, I can be happy when others are beyond their cancer journey- and even find hope in their healing. Other days, I feel guilty at how jealous I am of them, and angry that we’re still in the middle of it and may always be. Somedays I think being sick would be easier than being the caregiver. I know that’s crazy. But, it’s how I feel.

Somedays, I don’t even know how I feel. Somedays? I don;t have time to “feel.” I’m too busy doing.

Here’s what helps: 

  1. Knowing that someone cares. Quick “Thinking of you”. “Praying for you” and “This sucks.” texts or emails can really help. So can lame and awful jokes. Especially on cancer center days.
  2. Listening without judgement or, trying to fix me, or my situation. You can’t. Trust me, I’ve tried everything possible to fix this. The truth is-Cancer: Sucks. Also, trying to convince me how much good God is doing will only make me want to throat punch you. Even if you’re right. Sometimes, I KNOW what God is doing… but it just doesn’t feel fair or, worth what we’re going through.I’m selfish like that.
    1. Also: cancer patients are not saints. Caregivers sometimes get angry with them. It’s OKAY. Let us. We need to. Give us a safe place to talk. Then maybe we’ll have headspace to listen.
    2. Caregivers are also not saints. We can be jerks. Be sensitive- and be brave. If we’re being jerks- to our loved ones or you- call us out. We need it. We don’t like it, but we need it. We also need grace. This sucks. We need lots of grace.
  3. Remembering that we are in this battle, too. Caregivers are fighting right beside those we care for. Ask how we are, too. It matters. remind us to take care of ourselves. Ask about yearly appointments etc… we forget. Trust me.
  4. Talk to us about YOUR stuff. Sometimes we need to step outside of the cancer cone of silence and hear what’s going on with others. Don’t try to protect us. We can set our own boundaries. (Unless we can’t- then help us do that.) We need to be friends not just need friends. Ask us about non-cancer related things.
  5. Bring a meal. Don’t come in. Maybe text and make sure we’re home. Or, just deliver it to the porch in a disposable cooler. Surprise us. The house is probably trashed. Sometimes getting “ready” for a meal drop of is more work than cooking. Freezer meals rock. Not just on treatment days … but on good a few good days too. Those are hours that can be spent resting instead of “catching up.”
  6. Restaurant gift cards and gas or grocery cards are great. Sometimes I have to leave my kids and I forget to get cash out for them. Having gift cards on hand for pizza, gas, groceries is a huge convenience and help. So are Movie Gift cards. Or Amazon cards. Cancer and caregiving exhaust whole families and their bank and emotional accounts. Sometimes a night out or, in- is just what the doctor ordered. Hobby items are also good. There is a lot of hurry up and wait involved in being a caregiver. Having a god book or something to keep your hands busy can make a huge difference. Alternatively: Drop off a pantry box. A box of staple items that everyone needs and uses and runs out of.  Bread, Peanut butter, coffee, toilet paper, paper plates, napkins, milk, creamer, eggs, soup, pasta, sauce. maybe pet food if they have pets.. etc. You just saved a caregiver 2 hours of errand time.
  7. TIME. Take caregivers out for lunch. A movie. A girls or guys night out were cancer isn’t the focus. or- give a caregiver the gift of time to themselves. Check in on or take care of the kids or patient. Let the caregiver go out for some time alone. A massage, bookstore gift card, a run… whatever they need that keeps them sane. Help them do it. Take the kids out to do something fun we don’t have the energy to do. or just to be with them. Being available to help our kids makes us feel like we aren’t alone.
  8. Send a cleaning service. (Some people don’t want their friends cleaning their toilets.  I am one of those people. I’d rather have a stranger. Just sayin.) Send a yard service. Send over kids to pick weeds- or cut grass. Especially on cancer center days. Coming home to find something mysteriously DONE and an item checked off your list? Is amazing. Plant flowers or, dump and spread mulch, or hang plants on the porch as a surprise. These are things we wish we had time for, but we’re too busy surviving, to actually do.
  9. Send flowers or a card to the caregiver. Drop off flowers you snip from your yard. It doesn’t matter, just remember we’re working our butts off and could use some extra love.
  10. Be there. Be available. Long term. We will be flakey. We will forget appointments that aren’t cancer related.(And some that are.) We will sometimes be too tired for things we used to do. Sometimes we will need to say “No.” Because we’re just plain exhausted. Don’t take it personal, and don’t give up. Cancer can be a VERY long struggle. Lots of people show up during the first few weeks or months… then disappear.

We know it’s hard. We know it’s a lot to ask. But, no one can do cancer alone. Not even the most amazing superhero -caregiver. So- today? I’m asking you to understand what it’s like to be a caregiver…. and maybe consider what you can do to help the caregiver’s in your life.  Cancer is everywhere. You don’t need to do everything… but what you can do- matters! When in doubt: ask. Sometimes just knowing that someone wants to help- is enough.

Questions: 

If you’re a caregiver, what is on your dream list of things people could do to help? 

If you’re a caregiver, what are things that don’t help?

If you know a caregiver, or patient what have you done that’s been helpful? 

*this post inspired by a great and helpful read over on Huffington Post Parents about helping Cancer patients. I thought the other side of that coin might look slightly different and be equally helpful.

The shoes of a caregiver- whether, for a cancer patient, long term illness patient or elder caregiver- pinch and hurt. No matter how “comfy” we try to make them. Understanding how hard it is- helps.

Dear Lord- this is one of the hardest things I’ve ever had to do. Please help me on the good days and the bad ones. And please give me opportunities to help others. The shoes suck, help me wear the well and in a way that honors you. In Jesus name.  PS- Lord? I rather have a new pair of Fluevogs or Manolo’s or Skechers or comfy Slippers.. just sayin. Amen.

Dear IRL Friends… this isn’t a cry for help:) Don’t panic. It’s things I’ve learned along the way;) Today- here? Is a good day. Or, I wouldn’t have time to write;)

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