“What do you need? We’ll do anything you need us to do!”
I’m sure this sounds familiar to the caregivers out there. As I cared for my mother during her breast cancer diagnosis, friends and family full of good will continuously asked how they could help me. More often than not, I wasn’t even sure what to say.
Asking for what you need isn’t easy: it involves understanding and pinning down gaps in your ability to care and determining what and how others can contribute. In a way, being able to identify another person’s needs means addressing what hurts and doing a calculation between what is there and what is missing.
A few months ago, I conducted a survey that Carehood
sent out to patients and caregivers. Interestingly, both patients and caregivers agreed that very little was done to relieve the caregiver’s duties. When asked “what could help,” the vast majority of caregivers said “nothing.”
The few that answered something other than “nothing” said “emotional support,”
and that struck me as very important. To me, it suggested that emotional support might in fact be key to caregivers getting the help they need.
Below I've drawn up five ways that caregivers can work with
their emotions to start finding ways to ask for the help that they need, even when they're under more than just the general stress of having to be “the rock.”
1. Identify What Hurts
Are you feeling down, sad, angry, helpless, guilty? Caregiving is like being on a roller coaster
you did not ask to be put on. Ups and down become the norm and emotions often take strange turns, making emotional support crucial. Getting over the guilt of needing help or support should become an immediate priority, but this can only happen after you recognize and accept these emotions, these fears and anxieties, as part of the gig.
What part of caregiving takes the biggest emotional toll? If you find these are hard to identify, carry a journal with you and jot down a few lines about how you feel before every activity. Reviewing what you wrote at the end of the day may just give you a jolt of perspective about the things you find the most difficult.
2. Find Ways to Make More "Me-Time"
Caregivers might not know what they need because the simple act of asking themselves the question might make them feel like a selfish person; they are not the ones suffering from the chronic illness, they are not the ones in pain. But you are not a bad person for needing something – you are only human!
When was the last time you took a walk, got some exercise, painted, or got back to your guitar? If you tell yourself you don’t have the time to do that, think about chores or errands that you could off-source to friends or family – maybe they’re the ones that you find the most difficult to do. It’s even better if you can make it a regular thing and have a few hours a week for yourself to look forward to.
This time for self-reflection could allow you to reach back to your inner self and, hopefully, give you the strength you need to carry on.
3. Don’t Assume Family and Friends Are Mind Readers
Friends and family might not always be on-point; they might not understand what you're going through and could become frustrated. But they are not mind readers, and they won’t be able to understand how you feel if you don’t give them a little something to work with.
If you are unsure about what kind of help you need or how to ask for it, the first thing could be to simply talk to friends and family volunteering to help. Let it out, even if nothing you say makes sense to you or them-- starting a conversation
could go a long way. They might even be able to identify what you need because they do not have the same emotional barriers as you do, and could be able to put things in perspective.
4. Look For Resources
Being a caregiver can feel very lonely and isolating, but there are countless organizations and resources out there designed to bring relief to caregivers and patients. You can start by looking around within your community. For example, the Cancer Support Community
umbrella organization has affiliates in 170 locations across the U.S., and IHadCancer.com
has thousands of registered caregivers across the world.
You can also ask your local hospital to refer you to services that can include meal delivery, dog walking, babysitting, home healthcare services (nurses, physical therapy), legal and financial counseling, and respite care or substitute caregiving (someone who comes to your home). You can also take your loved one to an adult day care center.
5. Join Online Groups
You should take advantage of the beauty of our modern, connected era and find resources online. Among these, you might stumble upon online support groups. While searching for said groups, I found vibrant communities on Facebook with groups counting up to 4000 members. I discovered online gatherings of honest, touching, extremely welcoming women who exchanged on a daily basis. I was amazed by how kind they were to each other – they truly seemed to be there for each other, even though they probably never met in person.
These groups are a great way to feel like you are not alone, that others have walked the same path and made it! They are a great vehicle to form online relationships, to find people who understand and to get help from when you are unsure how to keep going.
Caregiving is no easy task. It often comes with the heavy baggage of difficult emotions like expectation, guilt, pessimism, and despair, which could lead anybody to the feeling that indeed, nothing could possibly help. But we cannot become so inundated with taking up others' burdens that we neglect to tend to our own personal needs.
As Tia Walker said, "Caregiving often calls us to lean into love we didn’t know possible." It's not always about being humble enough or strong enough to ask for what you need. Sometimes the smallest act of self-love can give you the strength to take on otherwise unsurmountable difficulties.
Photo courtesy of Dayne Topkin