As some of you know, my husband has a blood cancer. Multiple myeloma, to be exact. Over the last five years, he's undergone constant chemotherapy that has only been interrupted by a year of tandem stem cell transplants. A friend of mine's son was recently diagnosed with leukemia and I had a few words of advice for him but felt that it was worth posting it for everyone's use. As rates of cancer climb in some areas, it's something that will most likely touch your life as well.
So, if your spouse, child or parent has been recently diagnosed with cancer and you find yourself as the primary caregiver, I hope the following with help you deal with what you've been handed.
My Top 10 Tips for Cancer Caregivers:
1. Cancer is a full-time job. Depending on the cancer treatments, which can vary widely, your loved one is potentially looking at several years of various treatments. As the caregiver, you need to put your life on the back-burner to help out. Sometimes you'll need to show up in the morning and hang out all day until their treatment center decides you can go home. Expect a lot of waiting around and frustration. It comes with the territory.
2. Mourn the loss of your/their previous life. All the hopes, dreams and plans you had with your spouse or for your child are gone. The life you once knew is gone. I found this the hardest thing to recover from. You really are mourning for something that no longer can be, so take the time to mourn the loss. You have to adjust to what's generally called the "new normal". In other words, a precarious future. And that sucks.
3. Be their eyes and ears. Every cancer patient needs an advocate. Even if they are not dealing with chemo brain and a myriad of other drug side effects, you need to attend critical visits to the doctor to take notes, remember details and ask questions. The cancer patient, themselves, is often too much in a fog or stunned by what is happening to them to clearly remember what the doctor is telling them. This includes keeping on top of their medications, updating their physicians about their issues and not being afraid to speak up for them.
4. Accept support. Encourage your loved one to ask for and get the physical and emotional support they need. That includes medication to combat nausea from chemotherapy or any other drug they may need to be more comfortable. Cancer treatment is a heinous business and can cause a myriad of side effects. Make sure their palliative needs are being met.
Ensure that their emotional and mental needs are being met as well - encourage them to seek out psychological support from friends, family and professionals to talk about what they are going through. Nobody expects them to bear the burden on their own. Instead of asking them, "how are you feeling today?", ask them if they want to talk about how they are doing. Some days, they'll just want to focus on something else.
5. Accept help. When they are first diagnosed, people will come around asking what they can do to help. Don't turn them away! This was our big mistake. If someone offers to babysit, take them up on it. If someone asks if they can bring over dinner, say yes! My best advice is to create two lists - everyone wants to help so give them something. It makes them feel better and gives them a sense of control. They are hurting too.
Make one list for home - picking the kids up from school, mowing the lawn, doing laundry, making dinner, going food shopping are good places to start. For work - make a list of things that people can do for you like going to meetings and taking notes, whatever works in your environment. You'll need the extra time. Trust me.
6. Fair weather friends and family. Under duress is where your true friends come out. It's hard to deal with another person's sickness. Many can do it over the long haul, but it's not unusual for those you thought were true friends to disappear. Spouses, girlfriends, boyfriends of your loved one may fall away. Cancer is a stressful business and can create too much of a gulf. When faced with the choice of going out and having fun or sitting around with a depressed, vomiting friend or spouse for months on end, well, you know where this is going. Don't expect everyone to hang around.
7. People will say rude things. It's not their fault. They think they are helping. They oftentimes can't emotionally or mentally accept what's happening. They are in permanent denial. They've convinced themselves that it's not a big deal. So, when friends or family members tell you, "he'll be alright" or "she'll be just fine", try not to take it personally. It feels like they are discrediting or undermining the pain and hardship your family member is undergoing, but in reality, I think they just haven't gotten to the acceptance stage yet. And they may never get there.
8. Everyone else's lives will go on. While you are stuck in chemo mode and the roller-coaster of support and possible death, everyone else will be discussing their daily minutiae as if it were the end of the world. So, while your friends sit around discussing how difficult it is to decide what new sofa to buy or how expensive it is to fly to Europe for that 3 week vacation, try to stop yourself from punching them in the face. Yes, their problems aren't cancer, but it's a real concern to them.
9. Living with the unknown. For many cancers, it's never a done deal. There's never an "all clear" or remission. You just have to live life day-to-day. You need to relearn to live your life without planning the future more than a few years or even a few months out. You'll need to live with the pain of thinking that "this might be the last Christmas, or birthday, or summer vacation" that you have with your loved one. Life can become short-sighted, but you'll need to live like you, too, were dying.
10. Take care of yourself. This one is tough because you feel like you don't have the right to complain or say anything negative about what you are going through. You aren't the one with cancer. But you need to take care of your own physical and mental health. Make sure you exercise for stress relief and make sure you have people to talk to about what you are going through. You do have the right complain about what's happening to you. Because cancer sucks for everyone it touches.
If you are looking for more resources on how to help and how to advise others, I highly recommend The Etiquette of Illness: What to Say When You Can't Find the Words.