Tips for the Caregivers

Today I was approached by one of my community page followers who asked for advice on how she could help a friend who is going through cancer treatment. I could tell from her message that she cared deeply for this woman, and she said that she just wanted to see her friend smile again, but wasn’t sure how to approach her.

That’s a really tricky thing for a lot of people – finding ways to put all your well intentioned words into action. If you’re not sure how to approach us, just be honest. We understand that up until now, you didn’t have a script for how to be a caregiver any more than we have a script for how to be a cancer patient. It’s ever-changing and it’s hard on everyone involved. So go ahead and admit that this is hard on you too; you’re entitled to those feelings. And so are we, which leads me to my first bit of advice:

Don’t feel like you have to make us smile.

We appreciate your support and efforts to cheer us up, but sometimes we just need to be “in it.” For me, being “in it” means owning my feelings and working through them rather than dismissing them or pretending that they don’t exist. Call it a pity party if you must, but I have cancer so it is my party to throw dammit…and I’ll cry if I want to! I love a good cleansing cry from time to time, but I also love the friend who lets me cry instead of insisting that I need to be chuckles mcgee all the time. Like everyone else, we need to be allowed to have our bad days as much as our good ones.

That being said, sometimes the bad days are really, really bad. Living with cancer can be chaotic, especially when our emotions are running rampant. For me, focusing on the things I can control often helps; checking things off my to-do list, for example, gives me a sense of accomplishment. Often during treatment, however, cancer patients just don’t have the energy to keep up with that stuff, and the never-ending to-do lists start to become extremely overwhelming. Which is where a solid support person can step in. Second bit of advice:

Be specific about what you’d like to do to help—ask for our to-do list or create one and delegate among your inner circle.

When I was diagnosed, everybody and their brother came out of the wood work with an “anything you need!” mentality. The sentiment is sweet, but has little follow-through without additional directives. Cancer patients are dealing with endless appointments and chronic fatigue; we don’t have the energy (or sometimes even the cognitive capacity) to delegate roles for everyone that says they want to help.

I myself am a stubborn woman, and I often don’t know how to ask for help, let alone define what form that help should come in. The friend that says “hey lady, I’m coming to scrub your shitter!”  is a rare one indeed, and preferred to the one that says “Let me know what you need” because I will never let you know that my shitter needs cleaned; but if you show up with a scrub brush in hand I will be eternally grateful. Sweeping, mopping, dusting, taking out trash, doing the laundry…these are all things you can help with, and you can do as many or as few as you’d like. The key, again, is to be honest with yourself and admit that you also have limitations. You do not need to take on everything and spread yourself too thin. Your relationship with us could suffer as a result. The last thing we need is a caregiver who comes to resent us because they bit off more than they could chew. Instead, delegate. People all say they want to help…a good primary caregiver is someone who enlists additional family and friends and gives them tasks.

If cleaning isn’t your forte, perhaps making a meal would be a better way to help out. Who doesn’t love a home cooked meal that can be ready in minutes!? I recommend checking whether your friend/family member has any dietary restrictions or is put off by certain foods though. Much to my chagrin, while undergoing chemo I was completely turned off to bacon... I know right!? The injustice of it all! Just the smell of it made me wretch. But that brings up something most people don’t know…you should actually steer clear of making favorite dishes during chemo. Chances are if your friend/family member gets sick, that food will be ruined for them for good.

Not a good cook? Offer to take your friend/family member out, or, if they have little ones, offer to babysit so they can go out. Third bit of advice:

Find ways to provide a change of scenery.

Between childbirth, breast surgery, chemotherapy, more ladybit surgery, more chemotherapy, back surgery, hormone therapy, and radiation therapy…I’ve spent a fair amount of time in the hospital, in my bed, or on my couch. I did some serious binging on Netflix, which has its time and place, but is no substitute for human interaction and actual activity. After staring at the TV and the same four walls for so long, those walls started to feel like they were caving in on me. Plus, all the aforementioned housework began to mock me. I would see a dirty dish and completely flip my shit. Didn’t I just wash you!?

I’d never been one to invite myself anywhere, but I now jump at the chance to get out. Anyone who says they would like to visit, I insist on going to them or meeting up… preferably someplace with a patio so I can see the light of day. As a caregiver, there’s nothing wrong with simply “kidnapping” your friend/family member and treating them to a change of scenery. Some things to keep in mind though if you’re going for the “surprise! I’m taking you out of here” approach – fatigue can sneak up at any time so an all-day event might be out of the question, chemo and radiation make being in the sun a bad idea so sunscreen and a giant floppy hat are a good idea, patio = awesome until some jackass next to you starts smoking so I’d recommend a table closer to the establishment where hopefully common sense and maybe rules about distance to the building apply.

If you’re offering to babysit, really commit to it and give your friend/family member as much time as possible. My cousin recently babysat for us and was gracious enough to let us stay out as late as we wanted…movie night turned into movie night and an ice cream social. It was fantastic! I forgot for a little while that I was a cancer patient, and instead was able to be a wife, out on a date with her husband. Cancer patients have a heightened sense of just how fleeting, and precious, time can be. It is one of the greatest gifts you can give us – time to go out and live our lives!

For your friends/family members in active treatment, they may not be able to get out yet. Fourth and final bit of advice:

Meet us where we are! Speak life, walk love.

After my mastectomy, I was feeling pretty numb….though that could’ve been the narcotics they gave me. I had several drains hanging off my body and so much gauze and tape. I wasn’t permitted to shower and my range of motion was shit anyway so my hair wasn’t getting washed (what hair I had left after deciding to take control and cut it all off prior to chemo taking the rest from me). Needless to say… I looked a hot mess and wasn’t in a hurry to go out in public.

My sister came over a lot to help out and one day she randomly decided to give me a “spa day.” We put on face masks and she gave me a pedicure. I can’t remember what color she had picked, but I do remember feeling pampered. And pretty. And human. It was such a simple, sweet gesture that went a long way.

So maybe grab some polish and get a little girly. Bring popcorn or some other snack and put on a chick flick while you’re at it. Maybe make some mocktails-- I really enjoy a good virgin mojito and find the mint really soothing, especially during chemo.

The point is to just be there, in whatever capacity feels right for you both; to be the reminder that while sometimes it may not feel like it, life does go on. What we cancer patients want most is to live. But it is not enough to survive, we want to thrive! A good caregiver, a good friend, is someone who can help us sustain quality of life. Of course, this will mean different things to different people, but with patience and an open dialogue, you will be able to help in more ways than you may ever know.

For additional information and breast cancer awareness please "like" and follow Jenny B. living with MBC on Facebook at www.facebook.com/JBvsBC. 

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