Expectations for stroke/aphasia recovery—it’s what every family with aphasia wants to know. When is it going to get better? How can we cope with this? How do you maintain hope and yet be realistic at the same time? We know that anyone with aphasia, given time, motivation, and support can keep getting better and better. It’s been proven time and time again. It takes a combination of compensatory strategies, direct aphasia therapy and contextual aphasia therapy to continue to move up the ladder.
Many families with aphasia have been told early on to give up and forget about going back to work. They’ve been advised to not waste their money on therapy, or told that their loved one will be a “vegetable” if he/she lives after the stroke. The family can decide that they’re going to keep going no matter what, or they can take that advice to heart and do nothing.
On the other side, some families with aphasia are given specific recovery timelines—“you’ll get over this in about six months”. While this is encouraging, it’s often not realistic. When a full recovery hasn’t happened in six months as predicted, the family can be devastated. I’ve had clients decide on the anniversary of their stroke that it’s time to quit because “it’s still here”. How do you provide hope and encouragement when the person with aphasia gives up?
We often wonder if the best advice is to let families with aphasia know immediately that some level of aphasia may always be there. Our Intake Coordinator, Kathy, said that this realization was quite a blow to her in the beginning. It is a bitter pill to swallow, and in the end, I think health care providers want to spare the family pain. I’ve actually had a health care provider tell me that they purposefully give negative prognoses so that when the family discovers they are improving, they are pleasantly surprised. When you are expecting no improvement, do you tend to ignore the little changes?
So what’s realistic? If I frame this in more familiar terms, would it be realistic for me to say “I’m going to lose 50 pounds by next week?” Unless I’m cutting off a few of my limbs, this isn’t going to happen. What if I make it a goal for a year? What if I make a goal to lose 2 pounds this month? That seems reasonable. Then when I meet or exceed my goal, my success allows for further success and a new goal to meet. This creates what’s known as the “upward spiral” of success. What if I lose 40 pounds but not 50? I’ve perhaps adjusted my expectations and goals, but I’ve also made improvements. Making improvements is realistic.
Any improvements should be celebrated, although many persons with aphasia are perfectionists and may not ever think their gains are enough. This isn’t always bad as it can help them strive to reach the next level. So what’s realistic? Improvement in general. If you think in these terms, you won’t be disappointed.