In recognition of National Caregivers Month, the ALS Therapy Development Institute (ALS TDI) is presenting stories of members of members of the ALS community who serve as caregivers for their loved ones living with the diseases. Today, Emily Lowery – a caregiver for her husband Tim, who is living with ALS – joins us to talk about how she finds ways to practice self-care.
I tend to lean toward apocalyptic tv shows these days, like aliens taking over the planet. Prior to ALS, I didn’t enjoy those types of shows so much but now that a worst-case life scenario has happened - my husband Tim’s ALS diagnosis - I find the survival mode depicted in them oddly comforting.
Tim was diagnosed in 2018, after several rounds of ‘we think it’s this’ and ‘thank God it’s not ALS.’ When his neurologist ruled everything else out, we believed him and it made us both cry. For the first six months, we kept the diagnosis a secret. We wanted time to process the news ourselves, to grieve the loss of our planned future, and we didn’t want to ruin that last holiday season for our loved ones. It was our sad secret, and it felt really, really big. Tim continued working for the next eighteen months - a time I call the ‘new car smell’ days of ALS - and then the COVID pandemic hit and we were locked down at home in Buffalo.
There are all kinds of marriages. I once took a sewing class with a woman who was telling this story about seeing her husband’s truck pulling down the driveway and she said that she thought, “Oh no. He’s home.” She didn’t want to stop sewing. But our marriage isn’t like that. I was always excited to hear the horn beep from Tim hitting the lock on his key fob. Beep. Beep. He was home. I could run to the door and kiss him! We don’t come or go without a kiss. I really miss the sound of those beeps.
There’s a show called Swagger on tv where a coach says to a kid that he’s his 24-hour person. That means that you’ll show up for someone, no matter what they need and no matter what time it is. We get few experiences in life to be that for another outside of raising children, and Tim and I don’t have children. So, I’m literally Tim’s 24-hour person. That’s an amazing experience to get to explore in this life.
Caregivers are told all the time: ‘take care of yourself,’ by well-intentioned people. I bet all 24-hour people hear that from time-to-time. The trouble isn’t that caregivers don’t know that they need to care of themselves; our brains didn’t just exit our bodies at the moment of our loved one’s diagnosis. It’s that caregivers often have too little outside support to truly take care of themselves. Self-care feels like an empty ‘to do’ item being added to an overwhelming list. The solution to that is for well-intentioned people to offer specific support. Our neighbor’s son mows our grass, and I’m telling you, I hold some strong appreciation for that while I have to fight back the eyerolls when someone tells me to take care of me.
I don’t presume to know what good self-care looks like for any other person. Maybe today it’s taking a shower, or maybe you do that every day already, so you choose something bigger, like taking a short walk. A few months ago, I took a video of a glowy green worm just making his way out in the world on the railing of our porch, and that felt a lot like self-care to me. I do think it’s monstrously important, though, to draw a big red line and make your own health care a priority: go to your primary, dental and mental health care appointments. The latter can be done online if you can’t get out.
The ways I’ve invested in my own self-care are pretty diverse. Back when Tim was diagnosed, I took a course in historic preservation and maintenance, and then I renovated our house. That may sound a little extreme, but Tim and I had that hobby together already so I wasn’t starting from scratch. I would say look at what you already enjoy and figure out whether you can learn to grow your skills: by reading a book, or taking a class in-person or online. If it’s not within your budget, many online course providers offer scholarships to take courses if you fill out the contact form and ask.
I took up embroidery, and I love it because I get to be creative. European soldiers returning from WWI did embroidery in the hospital as a therapy, and studies have shown that one huge benefit is that it can calm the mind. It’s a medicine, really. Many courses are offered in an asynchronous format, or send out a live recording later. If you’re considering a class and concerned that caregiving may conflict with your schedule, that’s something you can ask about in advance. I replay a lot of videos because sometimes it takes me a minute to ‘get’ things that used to come naturally, before ALS. I give myself compassion, which I think is just as important as self-care, for that.
A school of natural perfumery gave me a scholarship to attend their online course, and I just made a custom scent for Tim. He has sensitivity to synthetics now because of ALS, so it feels really cool to do something like that for him, and that boosts my self-esteem.
Another big help to me has been to prioritize meditation and wellness lectures. I don’t view meditation as a way to quiet the mind so much as a different way to learn to be in the world. It has helped me respond with calm in moments when I’ve needed to. Every morning and night, I listen to an hour of wellness lectures or bedtime stories on a meditation app, which can give your brain some of the same benefits as meditation. This type of wellness has helped me develop more calm under pressure, and it’s made me a better listener. Some meditation app providers also offer need-based scholarships, like WakingUp from Sam Harris. He wrote a lovely promotion for Steve and Michel Gleason’s wonderful book, “A Life Impossible.”
It is very hard to watch a loved one go through the experience of this disease, and to go through it yourself as a caregiver. There is no denying that. There is never enough support. What I have tried to do, while recognizing that I’m in survival mode many days, is to find where the mid-trauma growth is. My way is not the only way, or the best way, and there are thousands-upon-thousands of caregivers with their own unique stories. What has helped in our house that I think can be universal is that we have a “forgiveness pass” with no credit limit and no expiration date. There’s no shame in wearing it out if you need to – or zoning out to a good alien takeover tv show either.
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