How to not throw a wheelchair.
Or, why it's important to take care of yourself, too.
There are so many things I want to cover in issues of this newsletter—safety, insurance, medications, legal documents, finances, and dozens of other topics related to aging. But first, we have to talk about taking care of yourself.
Wait.
I can feel that you’re about to tune out, to free yourself from thinking about self-care. You subscribed to this newsletter to prepare for the challenges your parent will face; you don’t want to be subjected to those tired metaphors about filling your own cup or securing your own oxygen mask. But hear me out—taking care of an aging parent is hard. It’s emotionally draining no matter how well you prepare for it. If you’re in an emotionally healthy place, you will be better able to take the steps you need to take.
One of the times my dad was in the hospital, someone told me to find a caregiver support group, but I didn’t think of myself as a caregiver. Caregivers were people who lived with their parents, right? They were people who quit their jobs, managed their parents’ medications, did the dirty work of day-in-day-out hygiene tasks, and sat patiently listening to their parents’ stories of the old days. I didn’t live with my parents when they were dying. I went to yoga, saw friends, and commuted to my office job. Not only that, but I didn’t think my dad even required a caregiver. He was still driving his car. He went days without calling me. He could tell you not only every movie that won an Academy Award in the 1940s but also explain the plot of “Black Mirror.” So, I didn’t seek out support.
But this was a mistake. You don’t need to live with your parents or dole out their meds to be a caregiver. They don’t have to have Alzheimer’s or cancer. If you are caring for them on any level–be it taking out the trash or researching urologists–you are a caregiver. And if you are a caregiver, you deserve support.
A 2020 study by the AARP found that 21 percent of caregivers report feeling “alone” in their caregiving journey. The folks who say they “feel alone” are suffering much more than their counterparts who don’t feel alone. “When caregivers feel alone, 72 percent report feeling high emotional stress, compared to just 24 percent of those who do not feel alone,” the AARP report says. Caregivers who feel alone also report that caregiving is highly physically stressful and that they are less physically healthy themselves.
But you aren’t alone in your caregiving journey—literally, there are about 50 million Americans currently caring for an adult at home. There are so many people doing a version of what you are doing, or who have done it in the past, or who will do it in the future. Finding support in this journey will help you manage your physical and emotional burden and help you harness the power of the people who have done this job before.
I’ll be honest; Googling “caregiver support groups” kind of sucks. But if you’re on board with getting support, but don’t really know where to start, here are some places to look, instead of just casting your Google net out into the open water of the internet:
Local hospitals and universities: Sometimes big institutions run caregiver support groups. You’ll probably be the youngest person in the room, but there are worse things.
Caregiver.org. They run online (email and Zoom) caregiver groups and have one specifically for folks under 40.
Hilarity for Charity. Seth Rogen and Lauren Miller Rogen started this group when Lauren was in her 20s and dealing with losing her mom to Alzheimer’s. They organize online support groups for people caring for aging parents with dementia, and they also provide grants for folks who need caregiving support. Just watching their online videos can make you feel seen and supported.
An association or organization specific to your parent’s diagnosis. If you are caring for someone with breast cancer, there are specific groups for that. If you are caring for someone with dementia, there are other groups for that. Search for an organization that specializes in your parent’s primary diagnosis and connect with folks who are caring for parents with the same diagnosis.
Facebook. There are Facebook groups focused on caring for elderly parents, caring for parents with dementia, etc. If you like the idea of posing questions and answering questions for others without ever having to be online at a certain time, this might be an option that works for you.
Perhaps you’re the type of person (like my husband!) who would read this list and think something like, “That’s great for other people, but I’m an introvert. A support group would cause me anxiety, not relieve my anxiety!” It’s worth remembering that your participation in a support group isn’t just for you. If you’re at the beginning of your caregiving journey, you might be fresh enough to support others who are farther along. If you’re in the thick of it, you might have figured out some great resources already and can share those with others. If the idea of a Zoom meeting or in-person support circle makes you want to hide in your hoodie, joining a Facebook group or a very large online group where you can lurk and learn might be a better fit at the moment. Finding support in whatever way you can will not only help you, but it will also help your parent, and it will also allow you to use what you’re learning to help others.
One thing I did when things with my dad were really hard was meet regularly with friends who would listen to me as I emotionally unloaded about my father. Every Sunday, I met with my friend Kelly, and often her best friend Mary, to run or walk. I would talk endlessly about hospice, hospitals, doctors, and decisions, and they would listen patiently and offer advice occasionally, trying to save me from my own mistakes. It’s not selfish to prioritize connecting with people who support you, and you’re not strong for hiding what you’re going through. It takes strength to admit where you’re struggling, to ask for help, and to acknowledge your mistakes. Invest time in the people in your life who encourage you to do those things.
Other things you can do to take care of yourself:
Consider what makes you feel like yourself, and prioritize that. Is it going to yoga, learning cross stitch, wandering the outlet mall, watching bad reality television, playing Ultimate Frisbee, drinking a Saison at the local brewery? Making time for the things you genuinely love will reconnect you to yourself and reduce your resentment about the ways caregiving has affected your life.
Think about the friends with whom you can share your caregiving stories, ask for advice, and emotionally unload. Make time to see them, talk to them on the phone, send them a voice note, or write them an email. (Maybe ask permission before you pour your heart out.) Consider setting a monthly or weekly reminder on your phone to reach out to someone to talk about your caregiving responsibilities.
Seek out a support group. You don’t have to become an active participant right away. Just start with one thing from the list in this newsletter. Maybe email yourself the info for the group so it’s available to you down the road when you need it. Or maybe you can start right away with a group that allows you to be more of a passive participant than an active one. When I hear “support group,” I think of an AA meeting I saw on “The West Wing.” Most groups you’ll find are not like this, and you can find support without putting yourself out there.
Draw boundaries. Caregiving is hard, and it’s easy to lose yourself in it, especially if you take things on suddenly or if your parent’s needs are particularly intense. We’ll probably talk more about boundaries and caregiving in the future, but it’s enough right now to start thinking about them. One way to start is to consider what tasks only you can do, versus the tasks someone else would be able to do, and start getting used to the idea of outsourcing or asking for help on those.
I wasn’t always good at following this advice. I put a lot of pressure on myself to manage everything perfectly, and I was prone to outbursts and breakdowns when I couldn’t.
One time, after taking my father to doctor’s appointments had become one of my jobs, I called about an hour before we had to leave.
“Hello! Are you up and dressed?” I asked in a voice that was bright, chipper, and, frankly, fake.
“I’m not going,” my dad said, flatly.
“What? Why?”
“I had a bad night, and I’m not feeling up to it.”
“Feeling bad is a reason to go to the doctor, not a reason not to go,” I said, tense.
“Lauren,” my father said. “I’m. Not. Going.”
“Yes, you are.”
I hung up the phone. I hung up on him! I never did rude things like that. I was livid. I raced to his apartment, screamed into the parking spot, charged up the stairs. I threw open the door. The lights were so low, it could have been midnight. He was sitting in the recliner, zoned out, his eyes on MSNBC.
“Get dressed,” I barked. The anger was rising; I could feel it in my chest. I fought back tears.
“Goddammit, Lauren, I’m not going!”
“You have to go! How are you going to feel better if you refuse to go to the fucking doctor?!”
“Jesus Christ, I’m 78 years old, I slept like shit, I’m not going!” he shouted back.
“You are such an asshole,” I said. I knocked over his wheelchair. I slammed the door on my way out.
It was not my finest moment, to be sure.
I didn’t do all the things I’m telling you to do in this newsletter. I didn’t take calming breaths before I went into the apartment. I didn’t call a friend. I took it personally that his illnesses and his depression were making it impossible for him at that moment to participate in his own care.
You will have these moments. You might call your parent an asshole. (I mean, they might act like an asshole.) You might hang up on them, slam their door, hold it against them that they are struggling.
My hope for you is not that you never have these moments.
My hope for you is that you forgive yourself. I hope that you give yourself some grace. I hope that you have the capacity to pause and consider what got you to that point and what you can do to find the support you need so that these moments happen less frequently.
It all starts with self-care.
So, I just discovered your Substack. I'm not in your demographic (my husband and I are in our early 60s), but we took his mother into our home 7 years ago when it became apparent that she could no longer live on her own. My struggle is this: my husband has a sister and a brother, both of whom live in our city, and they have done ABSOLUTELY. NOTHING. to help. Not a penny contributed, not a minute staying with her so we can have a break.
I'm still working full-time (although scheduled to retire next June), and we also have a disabled daughter and grandson who live 3 hours away who need our emotional and financial support. I am feeling so resentful of my husband's entire family and even of him because he insists we have to do it all, even though his siblings don't have children and his sister is better off financially than we are. I hate feeling this way but don't know how to avoid it.
I thought of you and this newsletter post when I read this article! https://www.npr.org/2025/04/01/nx-s1-5336314/caregiver-caregiving-identity-family-support-burnout (Your post and the article are both so good; I’m learning a ton!)
Particularly this part: “Given the emotional weight of the role, caregivers are often told to practice self-care: Go for a walk, do yoga. Caregiver identity theory suggests another approach: Think about who you were before, who you are now, and how those two yous relate.”