the patient caregiver…

I have mentioned this before, but being a patient who is also a caregiver is one of the more capricious dichotomies of my life. I certainly never expected to be a patient at this age, and I hoped for a couple of decades before I would become a caregiver.

When I talk with other caregivers (who are usually my mom’s age, taking care of their parents who are my grandmother’s age),  they often tell me that caregiving is a gift of love, and it is, but it’s an imperfect love. We learn how to be a good caregiver the hard way. The same way we learn how to be a good patient.

After my last post, I began to compile a list of things that, as a caregiver, I wish my patient knew, and that as a patient, I wish my caregiver knew.

What caregivers want you to know:

• We get blamed for things that are beyond our control. When my mom told the doctor she had a fall, the doctor turned and asked me, “how could you let this happen?” When we’re out in public and she rams someone with her walker, I get dirty looks or snarky comments.
• We’re afraid. If we are related to you by blood, we’re fearful that our genetics may be to blame for your condition, or that the genetics you passed on to us will lead to the same inevitable conclusion. Will anyone be there to care for us?
• We’re going to say the wrong thing. Be patient with us.
• Our suggestions of things to try will annoy you. You’ve tried that supplement, or that alternative therapy – of course you have. But don’t overlook the tireless hours we spent scouring through medical journals for any hope of making you better that was behind the suggestion.
• We want to make everything better, and it’s frustrating when we can’t.
• Be open with us about your fears, your sadness, your joy. If we brush it off, keep trying. We’ll get the hint.
• We understand that some conversations can be embarrassing, but we may need to have those conversations to make sure you’re safe. Help us come up with a system to make them less embarrassing for you. Maybe you can tell me you need some “pants” if you need me to buy adult undergarments, or we could put up a little chalkboard so you only have to mark a check next to the item you need me to do or buy. You could leave a joker from a deck of cards on the table when you need me to change the sheets.

What patients want you to know:

• We get blamed for things that are beyond our control. We can’t help when we fall, or forget things, or need help.
• We’re afraid. What if we’re not worthy of such great a gift? What if you’ll regret agreeing to care for us? Worse, what if you’ll resent us?
• When possible, always let your first response be one of love. I struggle with this one when my mom tells me she had a fall. My initial response is usually to ask where she was, what she was doing, etc. I’m working on first telling her that I’m sorry she fell and that I know how scary this must be for her. Then I ask her if I can ask a few questions about the fall.
• We take cues from you. If you don’t ever ask about the emotional toll our illness is taking, we assume it makes you uncomfortable and won’t bring it up.
• Yes, it’s faster if you just do it. Please let us do it anyway. We want to feel like we’re more than just a spectator in our own life.
• Let us help. If we can’t stand in front of the stove, maybe we can sit at the table and cut up some ingredients, or dictate the recipe, or read you the news from the day.
• We know it’s cumbersome to take us places. Imagine if you had to spend every day inside. It gets very lonely. Take us for a scenic drive sometimes.
• Always assume we can hear and understand what you are saying about us. Don’t talk about us like we’re not here.
• Please don’t take it out on us. You’re probably exhausted. You miss your old life. SO DO WE.

The most important piece of advice I have learned, which I use as both a caregiver and a patient, came from a speech therapist at a conference for my mom’s condition a couple months ago. She said to make a list of the things that are important for you, as a patient, to be able to do by yourself or with help. Maybe you want to continue gardening or painting. Maybe you feel it’s important for you to dress yourself, or help with the cooking. Work with your caregiver to put together a game plan on how you can continue to do those things. The rest is just noise, friends. Don’t waste your time and energy.

Friends, I would love to hear what you wish your caregiver/patient knew.

“The purpose of life is to be defeated by greater and greater things.”
– Rainier Maria Rilke

Smell ya later.
– Linds