Caregivers of Cancer Patients Can Take Many Forms
It’s not uncommon for someone to take months off from work to support a loved one, but many more people help by running errands, taking care of paperwork, and simply being a good friend.
You don’t have to be a full-time family caregiver to find the role overwhelming. Even simple tasks are emotionally loaded. Caregiving comes in many forms.
Helping someone fight cancer can be incredibly lonely. It can easily take over your calendar. Even when you do see other friends, it can feel impossible to care about normal life when you’re dealing with life or death decisions.
Sadly, many people deal with not knowing what to say by simply vanishing. Other times, we’re the ones who are pushing people away. It’s not always easy, but it’s possible to keep your friendships strong. Experiencing cancer may have dramatically changed who you are and what’s important to you and it can be difficult for your friends to understand that.
Even if you’re surrounded by a group of wonderful, devoted friends, sometimes you need to talk to someone else who’s been a caregiver to a cancer patient. You can connect with other people who’re supporting a loved one with cancer through online communities:
2. Compassion fatigue
If you’re having a hard time mustering up some empathy after a long day, you might be suffering from compassion fatigue. Compassion fatigue manifests as impatience, irritability, lack of sympathy, pessimism, and depression. If you’re feeling this way, it’s a sign to step back from your role supporting someone else. That might mean getting some sleep, going for a walk, talking to someone, eating a healthy meal, or just taking some time to recognize how you’re feeling. It’s important to take care of yourself so that you can be the absolute best caregiver that you can be. And remember to cut yourself some slack — you don’t have to be a saint.
3. Anticipatory grief & uncertainty
People associate grief with after someone has died, but many people with seriously ill loved ones experience anticipatory grief. You can experience anticipatory grief without a terminal diagnosis — you don’t need to have a doctor’s permission to worry about losing someone. Even if you know your loved one will survive, it’s normal to grieve the life you planned, even if you’re grateful for the life you’ll have together. Anticipatory grief can have all of the symptoms and just as much of an impact as ‘regular’ grief.
When someone who’s pivotal in your life is seriously ill, it throws your life into a turmoil. You’re suddenly facing a future radically different than the one you’d planned together. Cancer doesn’t care about the promotion you’d been working toward, the vacation you booked, or the promises you made your kids. As a cancer caregiver, you need to understand and prepare for the possibility that you will experience anticipatory grief, and most importantly, remember that it is completely normal.
When you need to accompany someone to doctors appointments and provide frequent support — or even just be able to take personal calls while you’re at work — it’s time to talk to your supervisor and HR rep. Before you say anything, learn your legal rights and check your employee manual to see what your company policies are. Even if you don’t need to adjust your schedule, it can be a challenge to act like everything’s normal during your 9-5.
Working from home, either through your current job or a new opportunity, can help you to manage caregiver responsibilities and your career.
5. Getting help
Some people want to help and simply don’t know how. Start by asking for specific things and giving clear instructions. Ask them to pick up groceries, walk the dog, drive the kids to school, or make a hospital visit and you might be pleasantly surprised to have people step up to the plate. Being in a cancer caregiving role can be emotional on many levels and in many ways, and the extra level of clear guidance will help them channel their support efforts.
6. Staying organized
Making sense of someone else’s finances or medical care is hard enough without the onslaught of medical bills and insurance paperwork. You can organize paperwork with an app or a binder — whichever works for you. Medical bills often contain errors, so don’t pay a bill you don’t understand. You can dispute a hospital bill or insurance denial.
There are lots of great apps to help cancer caregivers. A few of my favorites are:
- Tyze & Lotsa Helping Hands help you coordinate tasks with family and friends
- StandWith helps friends know what to do to help
- MyLifeline & CarePages keep everyone in the loop
- Prime organizes medical records and allows you to connect with family members
- PillPack organizes medications for you
- Mint can organize finances
- Breathe & Calm help you find your center when you’re stressed out
- Instapeer fights isolation among cancer patients, survivors, and caregivers
Finding Caregiver Support
Depression and anxiety are normal responses to a cancer diagnosis. You’re doing your best to support the cancer patient, but remember that your emotions are important, too. Many treatment centers have support groups for loved ones and cancer caregivers. If you’re having a hard time coping or having trouble sleeping, stomach troubles with no clear cause, tension headaches, or other physical symptoms of stress, it’s time to get help. Your loved one’s treatment team is a great resource to find out about support available for you.