In April 2005, I lay in a hospital bed in Chicago without the ability to speak, write, read, walk, or comprehend very little. What I did understand is that I had suddenly gone from successful, busy, articulate and independent to absolutely helpless. A major ischemic stroke and aphasia completely changed my life. My new reality was crushing, distressing, and hard for everyone around me. But on the long road to recovery I found that loved ones, family and friends were vital.
We may feel uncomfortable when approaching someone who is sad, grieving or suffering. No matter how well we know them, it’s hard to know what to do. Stroke and aphasia can seem bewildering. They take a startling toll of people. But it’s critical that we help our friends and loved ones after a stroke or aphasia.
If your friend or family member has already begun to accept and adjust to the new reality and is ready to start the journey to recovery, here’s how to step into the role of a helper:
Educate Yourself On A Stroke Survivor's Individual Situation
No two stroke survivors are affected the same way. Learn all you can about your loved one’s specific condition. In the first few weeks, the overload of information may be overwhelming. But take in every bit of knowledge you can, from medical information to the logistics.
The more you know, the more you’ll be able to get the best and more comprehensive care and support you can. If doctors explain things in a way you don’t understand, ask them to clarify — and make sure you grasp the information. The stroke survivor may be counting on you to understand and act on their behalf.
Learn How to Communicate With Stroke Victims
Many stroke victims suffer from diminished speech and language, including aphasia. This can be extremely emotionally draining for the survivor, making it difficult to reach anyone, let alone the people in their lives they’ve always been able to talk to. In order to understand and relay their needs, you need to be able to communicate. Instead of old patterns, you’ll likely need to learn new strategies: writing, drawing, verbal expressions, gestures, or a computer communication system.
Some tips from my firsthand experience: look directly at the person when you speak to them; talk slowly, clearly, and in a normal tone; use short sentences; and focus on one subject at a time. Keep background noise and other distractions to a minimum. If it helps, write things down. And above all, be patient. Let the person take as long as they need to say what they want to say. Don’t interrupt or correct them or try to finish their sentences to be helpful. Depending on the situation, the person may be tired, frustrated, discouraged, confused, or all of the above. The kinder and more empathetic you are, the easier you will be for them. It always helps to keep things light as well: talk about their favorite sports or movies, talk about food, or music. Just relax.
Play a Supporting Role
Often, a stroke patient’s successful recovery relies heavily on the support of those around him or her. Emotionally, it can be difficult for a survivor to overcome concerns about the present, let alone the future. Your role isn’t to direct their recovery: they have to find their own way and do it at their own pace, but your role is to help and guide especially in the early stages. But providing emotional support will be invaluable. As the survivor makes progress, keep learning about their recovery and how to best help them at each stage. Stay open to new ideas, and lend your ear if they need someone to listen. If they need to gesture, to sign, to write, to draw, be there to focus on it. Improvements, more likely than not, are going to stall and there will be highs and lows. Stay steady, grounded, and encouraging and try to keep him or her on the right course.
Know You’re Not Alone
It’s easy to feel as if you’re alone — and the survivor’s recovery rests solely on your shoulders. Caregivers may feel exhausted, stressed and worried, yet have difficulty expressing their feelings to others who haven’t been through the same experience. Being thrust into the role of a helper can be draining — you may feel like you could use some support of your own, and there’s no one to be found.
But if others are involved in supporting the stroke survivor as well, then you’re part of a team — and lean on each other. Compare notes, share feelings, and share the burden. Become a secondary support network — for each other — by taking turns with home-cooked meals, stepping in so someone can nap, sharing the experience. Everyone involved in helping a stroke survivor is a caregiver, but there is no one job description. So divide up the many tasks, and do what you’re best at, if possible.
Take Care of Yourself
As the caregiver, you’re incredibly important. You’ve also accepted a special responsibility to take care of yourself. You’re going to need breaks, so find other competent hands that can enable you to have a time out.
You will be better able to continue providing care if you are rested, refreshed, and invigorated. Don’t just walk down the hall, either: go have a meal with a friend, go work out, play sports, see a movie. No matter what it is, you need quality time for yourself.
There’s no manual for this role, and it’s likely one you never imagined you’d take on. Sometimes you’re going to let them struggle, sometimes you’ll be pitching in. And make sure you’re also caring for yourself, and dealing with your own feelings — so they don’t overwhelm you.
Everyone has a different path, different needs, and different setbacks. Set aside any expectations, be ready to adapt or adjust as the stroke survivor’s condition changes, stay flexible, and don’t give up. With work, love, and support, time does heal - and I’m proof of that.