On this show, we’ve talked to plenty of stroke survivors and stroke industry professionals, but not nearly enough caregivers. I’m thrilled to bring more of these folks, like Melia Wilkinson to your ears.
A lot of the focus in stroke recovery is about how life is different for the survivor, but it’s not just about us. Our spouses, partners, and families have their lives turned upside down, too. They find themselves thrust into a role in an instant — a role they never signed up for. Suddenly their financial and career future is also changed. Years of planning for the future are suddenly out the window.
Melia lived through those changes 5 years ago and continues to do so today. She’s been sharing her story in a series of guest posts on the Strokecast website to help folks understand what happens in the care model after a stroke.
You can read all of Melia’s posts over at http://Strokecast.com/Melia.And I was making breakfast and brought back some waffles for him. I still remember it. And he wasn't in the bed and I couldn't find him. -- @MeliaWilkinson #stroke #caregiver Click To Tweet
As I listen to Melia’s story, the recurrent them is about making decisions. There are a lot of decisions caregivers make in the early days and in the months that follow. They range from the big ones like end of life care or where to go to therapy to the small ones, like what to have for dinner. And decision fatigue is a challenge.
Steve Jobs always wore his black turtleneck. Mark Zuckerberg is known for his t-shirt and hoodie uniform (among a couple other things). These big household names chose wardrobes that meant not having to make decisions about what to wear every day. Each decision we make in a day takes energy. And they wanted to save the energy because they have to make much better and more important decisions later in the day. And so do you. And so do caregivers like Melia.
That’s one reason it’s so important for our caregivers to get adequate rest. Rest and self-care aren’t indulgences. They’re essential to adequately care for survivors and make the best decisions possible.
It’s just like they tell you at the start of every airplane flight while we’re all busy ignoring the safety demo — you’ve got to put your own mask on before helping others.I just...I couldn't wrap my head around what I needed. I knew I needed help but to try to articulate that was nearly impossible. -- @MeliaWilkinson #stroke #caregiver Click To Tweet
Melia Wilkinson anchors her family of three as they move through recovery after her husband’s massive stroke in 2014. She grew up in Maryland and has a degree in economics, which she has never used. Immediately after college, she spent a year in Japan teaching English and learning that she didn’t want to be a teacher.
She and her husband met on the East Coast but eventually moved to the Pacific Northwest for his job in computer games – and for the great coffee!
She had a robust career first in nonprofit and then in retail marketing before landing in sales after their daughter was born. The flexibility of sales served her well as a mom and even better as a caregiver.
While knowing very little about strokes, neuro recovery or even blood pressure, Melia quickly became an expert and an advocate and has strong opinions on how we can better help caregivers and fine tune and personalize therapy for stroke survivors.
She and her family are lifelong nerds enjoying Emerald City Comic Con, Doctor Who and anything to do with a super hero. Watching her husband thrive and her daughter prosper does allow her to see the real heroes in her life and makes the hard days better.Yes, this is hard. But the alternative would have been much harder.-- @MeliaWilkinson #stroke #caregiver Click To Tweet
Stroke Awareness Month
May is stroke awareness month. And while recent stories about the deaths of John Singleton and Luke Perry are on our minds, and we’ve gotten to read the amazing story of stroke survivor and Game of Thrones star Emelia Clarke, there is still an opportunity for many people to learn more.
So, for this month, consider sharing the BEFAST warning signs for stroke on your Facebook, LinkedIn, Twitter, office bulletin board, side of your car, email signature, or other communication medium. Or do something radical like talk to people in person. We want as many people as possible to recognize the signs of stroke as soon as possible because time lost is brain lost.
When someone gets to the ambulance quickly, it makes a huge difference. We saw that in Anne Dailey’s story in episode 14 and we hear that again today from Melia Wilkinson.
One reason I have my disabilities today is that I woke up with symptoms so I couldn’t get treatment like tpA. It makes a difference.
BEFAST refers to Balance, Eyes, Face, Arms, Speech, and time for an ambulance. Sudden loss of balance, vision issues, facial droop, arm droop, or speech challenges are all signs that a stroke is happening now. Call emergency services and get an ambulance immediately.
Here’s a graphic you can share on your own site or print out to hang on your office refrigerator or bulletin board: http://strokecast.com/wp-content/uploads/2018/10/Magnet-befast-for-shutterfly.png
Make sure everyone around you is aware because stroke can happen to anyone.He was able to get tpA very quickly which they... because of the severity of his stroke, they really do think was paramount in the recovery that he's had. -- @MeliaWilkinson #stroke #caregiver Click To Tweet
Hack of the Week
If you travel occasionally, keep a bag packed with travel gear. In Melia’s case this includes a portable bed rail, meal tray, accessible toilet seat, and a portable CPAP machine for her husband. This way they don’t have to unpack, repack, and remember things each trip.
Prestroke, when I was a frequent flyer, I had a second set of toiletries and charging cables already in a suitcase so they were already to go and I didn’t have to worry about forgetting things. It really simplifies packing and travel.Everybody needs to get short-term disability. It's like $2 a month and it kept us from going bankrupt. -- @MeliaWilkinson #stroke #caregiver Click To Tweet
Melia’s articles on Strokecast
Melia on Twitter
Anne Dailey on Strokecast
Emelia Clarke’s New Yorker article
John Singleton’s death
Luke Perry’s death
My thoughts on Luke Perry
Kate Lorig on Building Better Caregivers on Strokecast
Where do we go from here?
- Check out all of Melia’s Strokecast content at Strokecast.com/Melia.
- Share your comments or thoughts on this conversation, or reach out to Melia, in the comments below.
- Subscribe to Strokecast for free in your favorite podcast app so you never miss an episode
- If you’re a survivor, thank your caregivers
- Don’t get best…get better
Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.