November is National Family Caregivers Month, and this year Caregiver Action Network has chosen the theme "Care Connects Us." The month invites caregivers to share their stories, and one of its prompts is simple enough to answer in a sentence: Who do you care for?
Most of us answer with a label. "My mother." "My husband, he has Parkinson's." "My dad, since the stroke." The answer is true, and it is also short. It tells a listener the relationship and the diagnosis, and it leaves out the person.
This post is an invitation to answer the question more fully, for yourself first. It takes about ten minutes, a pen, and no one watching.
Why such a short question is hard to answer
Caregiving shrinks language. Days fill with medication times, appointment windows, insurance calls, and handoffs between family members. After enough months, the vocabulary of care becomes the vocabulary of tasks, and the person you love starts to arrive in your own mind as a schedule.
The other reason is that the question has a second half most people skip. Someone is doing the caring. Family caregivers rarely say that person's name out loud, because the conversation almost always turns back to the one who is ill.
My answer, after 17 years
I was a caregiver for 17 years. For more than six months of that I was home with my husband, Lee, on hospice, mostly on my own. Two months before he died, someone on his care team told me that only his needs mattered and that I could deal with myself after he was gone.
I refused. I kept my own appointments, and I have never regretted it.
So when I hear "Who do you care for?", my answer has three parts. I cared for Lee, the whole man, including his humor and the way he said my name. I learned to care for the woman sitting beside him, who was also a person with needs. And I care now for the people still in that chair, because I remember how few people asked how I was doing.
That is one caregiver's answer, shaped by one set of years. Yours will be different, and it should be.
A ten-minute way to write your own answer
Write by hand if you can, and keep each step to a few lines. Nobody has to read this but you.
- Name the person, then describe them without the diagnosis. Start with the name. Then write who they are when illness is not the subject: what makes them laugh, what they are stubborn about, what they hum while doing dishes.
- Write down what only you know. The way they take their coffee, the story they tell at every holiday, the phrase they use when they are worried. This is the detail a doctor's chart cannot hold, and it is the knowledge caregivers carry.
- Say what the work asks of you. Be honest and specific. "I manage nine medications and every phone call to the insurance company" is more useful than "I do everything."
- Say what the work gives you, if anything. Some caregivers find closeness, pride, or a deeper understanding of someone they love. Others find little right now. Either answer counts.
- Add yourself. Finish with one sentence that begins "I also care for..." and name yourself. Then write one small thing you need this week.
Use your answer to ask for help
Many caregivers struggle to ask for help because the request feels too large to explain. Your answer solves part of that. Step three already lists what the work involves, and step five names one need. Together they make a specific request: "Could you take the Tuesday pharmacy run?" or "Could you sit with Dad for two hours on Saturday so I can sleep?"
Specific requests are easier for friends and relatives to say yes to. They also remind the people around you that care is a shared job, which is the heart of this year's theme. If you want to read more about the weight of unseen caregiving work, I wrote about it in The Invisible Labor of Caregiving.
Keep what you wrote
Fold the page into a book you read often, or photograph it. Some people read it aloud into a voice memo, which keeps the sound of their own voice alongside their words. If you also have voicemails from the person you care for, they can be lost when a phone plan changes or a device fails, and this guide to saving a loved one's voicemail walks through how to protect them.
Caregiver Action Network, an independent organization, is hosting a month of webinars and conversations around "Care Connects Us." You can find the schedule and community resources on their National Family Caregivers Month page.
If you want a place to start
Writing the answer may show you that you are carrying more than you realized, or that you are unsure what to do next. That is a normal place to be, and you do not have to decide anything today.
When you are ready for a suggestion, the free Legacy Path Assessment asks about the season you are in, what feels hardest to carry, and the pace that feels right. After you confirm your email address, it sends a personalized Roadmap that points to a fitting starting point. You choose how far to go from there.
If you are still in the middle of caregiving, my book The Empowered Caregiver: Overcoming Fear, Stress, and Uncertainty is written for you. It is the book I wanted when I was the one still pouring everything into someone I love.
One more question
This week, if someone asks you who you care for, try answering with the name, one thing only you know about them, and your own. Say it out loud once. You may be surprised how much it changes the conversation that follows.
You do not have to carry this alone, and you matter in this story too.
Andrea B. Denney