Self-Care for Caregivers

Saturday, December 22, 2018

I'll keep the personal details sparse, but a few months ago, I found myself -- a fairly high-achieving, ambitious recent grad -- setting my career temporarily aside to become a full-time caregiver. Literally overnight, I went from an exciting job change to administering injections, organizing fluctuating cocktails of 20+ medications, and coordinating with a multilingual medical and social work team. For the first few weeks, in between daily hospital visits across the Peninsula (110 minutes to drive 14 miles in traffic, fuck my fucking life) and the constant alertness, I cried all the time from sheer exhaustion. And, more often, from frustration at suddenly assuming so much responsibility. Mostly, though, I felt like a sad little island.

A lot of the existing literature counsels adult children on how to care for their elderly parents, and prescribes as much of a reliance on professional help as possible. I was encouraged to go to a support group for caregivers, but they were mostly older adults, some near retirement, caring for partners or parents they'd long anticipated would need them. It seemed like an organic, natural transaction for them: I vowed to stand by my partner in sickness and in health; after four decades of good health, together we will brave the sickness. Or, late in adulthood, the filial children would come home for a few days in gratitude to the grueling work of nurses and medical aids. I was (am) twenty-two, filial as they come, and still completely unprepared for what 24/7 caregiving would ultimately demand from me.

So anyways, here's what I wish someone had told me, and how I've survived. And nearly come through the other side.

1. Seize your personal time, no matter how short. 
Long commutes to the hospital every few days? That's your fucking time. Listen to your podcasts, your playlists, your audio books. Force yourself to take your mind off the medications, the lab results, etc. There is nothing more you can do for another person while on the road. You cannot make them more comfortable. You cannot do more research on experimental drug treatments. So take that time for yourself. You'll need it.
My favorite easy-listening podcasts for such occasions:
Armchair Expert with Dax Shepard
Very endearing, surprisingly wise, always with a bit of frank self-reflection that we could all do more of.
Freakonomics Radio
This one makes me feel very WASP-y, which is my favorite problematic mood.
Saturday School
Pretty sure this might be made for children, but I like it a lot.
All your favorite cults and mysteries, explored. I'm really into weird sex cults at the moment.

2. Pack your own shit, too. Your own survival kit. 
When you're a caregiver, your life feels like it completely revolves around the patient. You carry their medications, their blood sugar monitors, snacks that fit their dietary restrictions, etc. But don't forget the shit you need to keep yourself sane. For me, it's a Kindle (in case y'all were wondering how I read so many books), caffeine supplements (you won't always have time to grab a coffee but you will always need the boost), and a water bottle/thermos. In my car, I keep a pillow (a nice memory foam one, because #selfcare), blankets, La Croix, snacks, more books, and a change of comfortable clothes in case I get a pocket of time to run into the parking garage for a nap. Keep all your stuff in a backpack so you're hands-free for the wheelchair, etc.

3. Other people may not be able to help. But they can listen to you vent. 
I fucking love venting. This was my saving grace these past few weeks. In this specific occasion, it's never so people feel sorry for me, or to further my own resentment. I am filial to my core, always, and would never hesitate to do this again if asked of me. But it's fucking hard, and I am better at it when I don't feel like I'm entirely alone. Ask a friend or loved one if they have the bandwidth to handle a complaint session (something I learned to do because people are always going through their own shit too!) and then unleash. I've dropped about a billion f-bombs lately. Venting helps you (1) validate what you're going through. It's so hard. It's so fucking hard. There were days where the "patient" felt resentful about being so helpless and lashed out, and I felt attacked no matter how hard I was trying. There were other moments when I had to leave a friend's birthday party early to be home to monitor vitals, or when my peers were out at music festivals and raves and my own life felt completely out of my control. It felt so good to have someone say, "wow, that sucks. I'm sorry you have to go through this. I am proud of you for doing your best." (2) It keeps the frustration from spilling out at inopportune times.

4. Some people can help. Ask for it. 
Advocate for yourself, and for your family - especially when there's a language barrier. Exhaust all possible resources. It's okay to tell the social worker, "no, we aren't able to make that work. What other options can we explore?" Make friends with the valet, who will be kind and human and tell you that you're pretty when you're feeling sorry for yourself. Ask the doctors to clarify what you don't understand. Set boundaries. Practice saying "I need some time to myself. I will take care of this when I am ready." DM us/me on Instagram if there's anything I can do to help.

If you are in this situation:
You can do this. You are so good and brave, and you will never, ever regret this kindness. Do a little bit of what you love when you can. Step back when you need to. You will get through it all. You are the person someone prayed for. You are the reason someone is still alive. You are more than this role. Your life is still your own.


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