So life’s caught up to you.
Someone you know and love has cancer or some other dread disease and you want to help (or have found yourself wanting to help) care for them.
And you don’t know what the fuck to do.
It’s all so overwhelming and hard and strange and tiring and confusing. You’re struggling to keep your head above water there are so many things to do and think about. So many dire decisions.
I get emails like this all the time now from friends and readers who are going through this. They’ve been thrust into caregiving by an illness of a loved one. They want to show up and do the right thing. They ask me for advice.
3 ring binder the shit out of all the paperwork
Get a 3 ring binder where you (and the person you are caring for, if they are able) can keep all the info the doctors and nurses and anyone else give you in one place. Or maybe a big file folder is more your style. Pick a system and use it.
You will be inundated with sheet after sheet of test results, forms, scripts, etc. You might want to be able to put your finger on her last blood tests, say. If you don’t keep it all in one place, that will be hard to do. And you will burn energy you don’t have looking for something simple like that. You can be a better advocate for your loved one if you have all the information handy.
The “Running Notes” notepad
It’s also a good idea to have one notepad or notebook (of these can be sheets of loose leaf paper you keep in the 3 ring binder) where you keep a running log of everything related to her health. You’ll want to write down things like: questions to ask the doctor the next time you visit, her vitals when she goes for tests (weight, blood pressure, date and time of recent BMs — yes you might you have to keep track of this), questions you think of to ask the doctor at the next appointment (undoubtedly you will have questions you did not ask, forgot to ask, that came up in between appointments), etc.
You will find it handy to keep track of how she’s feeling, what she’s eating and when, what her sleep was like. These details become more or less important throughout the illness. But having someway to follow along will help with certain decisions.
The reason to have these running notes is threefold.
One, it keeps track of where you are in the illness. It’s a logbook for you and her caregivers. You can use it to take notes at appointments and to look back to reference what the doctor said, how she was feeling, etc. Memory is tricky. Don’t rely on it. Especially when you are overwhelmed and tired beyond belief from the caregiving. Stress and worry does a number on memory.
Two, you won’t always be the one caring for your mom/dad/partner. If you aren't the one taking your mom to a certain appointment or if someone comes to spell you from your duties for a bit, they can see what's been happening with her care and you can ask them to take notes of things they do with her, what they observe. That way, when you get back to caring for her, you will know what has been going on.
Finally, it gives you a sense of control when you feel you have none. You and your loved one have just been walloped by life. Being able to write down lists and numbers and have something to do with your hands counts for a lot. It will help you deal with the stress and the worry and the anxiety.
I’ll keep writing about this topic as people keep asking me questions and reaching out. You can send me an email if you have questions. Until then, I am thinking of you and your loved one. Caregiving is everything — sweet, terrible, hard, amazing, will kick your ass, will make you weep for joy and wonder, will humble the shit out of you, will make you realize how strong you are. I wish you presence during it. Be with them. Show up. When in doubt listen and be present. That’s all anyone needs ever. Close your mouth and be there in person. And if you are moved to ask about their spirits or how they are doing ask “where does it hurt?” and “what’s the hardest part about this for you?” And listen to the answer. And if possible, find someone to ask you (the caregiver) these questions.
You are enough and I love you.