A Caregivers "To Don't" List

As we lay awake at 3am, we often ran through our never ending "To Do" lists. There was always a new symptom to consider, a new worry or development. Our inner monologue would include things like: "We need to figure out physical therapy exercises or maybe a stationary bike would help. And I need to read more about nutrition. Maybe we should sign up for one of those meal delivery services. Did I pack the kids' lunches? We also just need a humidifier in every room for Colleen's comfort." 

While our sister, Colleen, faced end-stage cancer and increasing symptoms, we were working moms living in different states and traveling each month to visit her and to help care for her. If we were not with our sister physically, we were there mentally, constantly thinking of ways to do more, and seeking updates from the home front. If you don't yet know us, read more about our story

As very close sisters, we would have done anything to change the outcome for Colleen. After trying to wrap our minds around the fact that there was no more treatment available and our sister was going to die, the only thing left in our control was to try as hard as we could to improve her quality of life, whether it was via massage, nutrition, or just some good laughs as we spent time together. We were always thinking of ways to make her feel more comfortable. We lost sleep, racked up airline miles, wrote endless email updates to our sisters, and learned all that we could about wellness and alternative therapies. We turned to Cheetos, Zingerman's coffee, dark chocolate, and each other for comfort. 

We were proud to be her sister caregivers, but the amount of stress was overwhelming. We have read the research about coping which provides the usual advice, but seriously, stop telling us to sleep. We personally understand the need to "take care of ourselves," but don't know where to find any more time or energy to do that.  Caregivers are often told what they need to do. DO be sure to exercise. DO get enough sleep. DO try to be social and see friends. Yes, these seem like good options to stay healthy, but how is that actually accomplished when you are a working mom who lives out of town from a dying sister? So, why keep adding to a caregiver's long "To Do" list and guilt them into these things that they already don't have time for. Instead, save them time and tell them what NOT to do. 

DON'T fret that you aren't being a good parent right now. It is not possible to be good at everything. You are focused on being the best caregiver there is and that should be applauded. Your children will be ok and may learn to be more empathetic.

DON'T worry about the laundry today. It will still be there tomorrow. You can take a nap instead of folding laundry. In fact, napping should always be prioritized above laundry or anything else on the To Do list.

DON'T feel obligated to go to that school happy hour. It will just be a reminder of how everyone else is leading a normal life and not caring for their 39-year-old dying sister. You may start crying in your drink to other parents that you don't know very well and that will be just be embarrassing when you see them at drop-off in the morning.

DON'T exercise at the gym because you may start crying on the treadmill. It is one of the few times that you have time to yourself and can think about the sad tragedy going on. Maybe just stick with a walk outside to obtain a little more privacy in your public crying.

DON'T cook tonight and instead spend the extra time watching a "New Girl" marathon with your sick loved one. The take out food may not be memorable but the many laughs that you share together will become happy memories.

DON'T listen to the misguided advice and ignorant remarks. Most people have no idea how to help you. None of your friends are watching their sister die of cancer and they can't relate to your public crying and exhausted looking face.

But you are not alone if you are a young adult sibling caregiver. We, too, have had this experience and understand how impossible it is to keep it all together as a working parent and caregiver. Our advice is to stop worrying about all of the things to do and instead, focus on what really matters- being with your loved one and caring for them as best as you can.